14 Weeks Post Surgery (8/11/10)

[Ojosgris]

I am still not feeling too good,Although I think i am improving little by little but I am dealing with some symptoms...   My leg and arm still occasionally feels numb but not as bad as before surgery.The ringing in my ears really never went away it was slightly gone but came back after i had a really bad head cold. Ever since I am experiencing dizziness, Head pressure( slight pain)mainly pressure in the temple and ear area. I recently returned back to work (1 week) and my eye are bothering me alot i guess from the bright lights and the computer. I ocassionally get that shaky tremor feeling in my hands and ocassionally my legs feel heavy and weak I am wondering if the reason is because i was basically inactive for 3 months and my muscles are still very weak. I have been to an ENT he said he does not see anything wrong with my ears or throat. Tested my hearing and that is good. Basically i thin i may have a sinus infection because when i take a Sinus Decongestant it helps with the pressure feeling. I called my NS and he is convinced this has nothing to do with any complications due to surgery. I just feel like he is brushing me off and does not want to deal with me anymore. His attitude is almost like he did his job.  I was really hoping he would recommend an MRI and do some blood test's to make sure everything was fine.Then i could deal with my symptoms and not worry about it... He only wants me to have an MRI and follow up in April 2011.  What should I do??? Should i go to an Neurologist? Should i be concerned? Or is this normal to feel this way 14 weeks after surgery?  I am just worried about possible ICP or even a CSF leak.  Any advice will help me I feel very alone right now, I dont think any Doctors really care or understand how i am feeling.  

[selmaS]

HI and welcome to the Chiari forum.

First it can take up to 2 yrs for u to heal completely...second, it is possible there is something else going on...the NS at this point has  done his job and unless u have a major issue and can prove it, he will not see u until ur 6 month post op visit or what ever time frame he works with.

What I have noticed along with a few others on here is we do go thru stages of recovery....that being said...what I mean is we do  get symptoms back, not as strong as b4 surgery, and they do not last as long, but they do come back, this is normal and part of the healing process.

When u need to be concerned is if it is new, and is  more pain  than b4 surgery.....

Find a good NL in ur area to check u out, but I do remember getting disappointed thinking it's all coming back...the leg numbness ect....

But give it time....nerves take time to heal and will let u know that they r by the way u feel....

Many of us do have issues with sinuses....ur PC may even be able to help u with that....mine gave me a great nasal spray that works great....


Good luck and relax....
"selma"

[*Stormy*]

Hello!

I can totally understand what you are going through, it is very similar with what I dealt with after surgery. First off, I had a terrible head cold about a week after surgery and A LOT of us do, so I can't help but wonder if it has something to do with the surgery. When I told my NS, he seemed interested on whether it was just me that was sick or some of my family too. I saw my NS at 2 weeks post op but I'm pretty sure he did that as a favor to me (to get my stitches out,...I didn't have a good relationship with my GP at the time) but I don't think they do that normally. Honestly, if they do the surgery and everything looks good, it is sort of the end of the road for them.

What I have found in almost every situation, is that the aftercare is awful for this type of surgery. Just recently after almost a year after my surgery, I have found myself finally in neuro-rehab and they even told me that they couldn't  understand why I wasn't sent there right after surgery.

I never lost the ear ringing and I kept a lot of other symptoms too. I gave myself 2 months to recover and then I went back to my GP and told her that I felt I needed to investigate things b/c I wanted to get as close as I could to what I was before. Really, who wouldn't? So we started with blood tests and seeing different specialists and where I have ended up now I finally feel like it may be the right place. So, now is the time for you to start pushing again and trying to figure things out. I know it is sad when you realize after surgery that the journey is not actually over but unfortunately, that is the way it is.

BTW- Before I knew I had Chiari I used to take decongestants all the time and it really helped with my headaches. I think it opened things up and helped take some of the pressure off. So, you may have a sinus infection (which you should definitely get checked out) but you may also be dealing with high pressure in your head still which I dealt with for at least 4 months after surgery and it comes back sometimes even now.

Hopefully you have a good GP that you can talk to and they will know where to send you first. A NL may help but in my situation they never could do anything for me. Who knows your GP may be concerned enough to refer you back to the NS and then he will have to look into it.

Good luck!
Carolyn

[pamk5]

I was trying to post earlier and lost my signal so here we go again.  I cant be alot of help to you as I have not had the surgery yet as far as what to expect, etc.  But I can say especially since you just had a head cold, sinusitis is a very good possibility.  Can you ask your PCP for a round of antibiotics to see if that improves it?  

I have lost alot of faith in the medical community, it seems as soon as they dont know what to do with you they push you out the door.  One of the things that you do have in your favor is the ability to demand the care you believe you need.  Have you discussed your fears of complications with the NS?  

I am glad you have surgery behind you and are at least some improved.  I am sure some of the others who are post op as well will be able to help more than I can.  Good luck to you and feel better!