I guess my surgical expectations were unrealistic

I had my surgery 6 days ago. The surgery went without complications, and there was no need to open the dura. I had no syrinx.

My pre-surgical symptoms were not nearly as bad as many of you here. I had almost constant pressure in my ears, headaches and occasional dizziness. I also had some neuropathy in my extremities which was partially due to a B12 deficiency. I was diagnosed and had surgery within 6 months of the symptoms beginning. My hopes were high that it would all go away and I could just move on with my life.

I now have the realization that this is not the case. I totally understand and accept the fact that I am sore from the surgery, and that headaches are par for the course. What I don't understand is why I still have this pressure in my ears. I also have a worsening of the neuropathy in my left arm. I was really hoping to notice at least SOME improvement after surgery, but honestly, I haven't. I'm sad and frustrated. Did I do this for nothing? Perhaps the Chiari was not the cause of my symptoms afterall? Although I was seen by just about every other specialist under the sun and cleared by all of them, perhaps someone overlooked something?

I am hoping that I will begin to see some improvements over time.

I just had my surgery 5 days ago. The only symptom I had was bad headaches. To the point where I was in the bed most of the time and couldn’t enjoy my husband and kids. I had a rough few days aft surgery but each day is gettin better. My head is still hurting somewhat but I think it’s due to the sore and stiffness of me head/neck. I hope as time goes by u will start to see a difference with ur surgery. I’ll be praying for u!!!

I have to agree with the other 2… I am 9 days post op… I did fantastic the 1st fews days… then I was hit with the worst headaches ever - which wouldnt go away despite doctors trying tonnes of pain medication.

However I realise it is due to my neck muscles being tense and they start to spasm. After my neck is massaged I feel much better.
It will still be swollen! My chiari symptoms were still there - like I said im 9 days post op and only now am I able to strain on the toilet lol tmi!!

I hope the pressure calms down… just need a bit longer to give it time to settle x

Darmus,

I am very sorry you haven't experienced any improvement post surgical. May I ask why your NS decided not to perform a duraplasty? I have talked to many Chiarians that didn't have a duraplasty that had negative results and needed a second surgery. Beeba a Moderator on this Forum experienced the same thing. I am sure she will share her experience with you.

Would you please explain what the ear pressure feels like? I also had ear issues but not from pressure, from compressed cranial nerves.

Tracy

I have had a decompression and duraplasty about five years ago. Things were great until the end of last year. All my symptoms plus new ones have returned.

My symptoms arent bad enough for me to have surgery (according to my neurologist) and the neurosurgeon she referred me to said there was no need for me to see him. I had a pinched nerve that has caused a bunch of problems in my left arm and neck. My physical therapy helped and I still see some symptoms but its not as bad. If the symptoms dont go away after another month or so it could be possible that you may have a pinched nerve that just hasnt corrected itself. But I agree with the others. Give it a few more weeks before getting too worried. I hope it all gets better for you.

Hey! I am now 3 months post op. I can tell you for me everything got worse and that is really scary when you think about wha t was dobe during the sutgery and then fear that there is now nothing else that can be done and second guessing the choice! But, by two mon the hs I began to feel somewhst better and that is a huge relief. I have good days anf bad days. I have to be careful with myself. I have seven young children and by the end of most days, I am in a lot of pain and some symptoms begin to rear their ugly heads! This is a hard recovery physically and emotionally. The best thing you can do is relax, surround yourself with as many positive people as you can (seriously, if you have to pick one person to just tell you every day that you are doing great, be easy on yourself and that it will get better, do it!), and write down how you feel, what starts to feel better, even just a smidge and celebrate those little vic tories because they become a bigger victory once added together!
You are important and valued. People here have been where you are and are more than happy to help hold you up during your down times just as theyy have been held up through theirs. It WILL get better! You are goibg to get through this. Don’t give up. And, don’t be afrai to talk to your doctors about pain management!

Hi! It took around 6 months for my headaches to be completely gone after having surgery. I was told that that was common. Then another 6 months (total of a yr ) was when they started to come back again. Including memory problems, dizziness, all of it. Next to impossible for me to compare me now to me then. Other than I’m utterly miserable and am tired of all of this! I’ve read so many threads of people having the surgery over & over which I’m terrified of! I asked a lady that was about to go thru her 2d surgery how she cd go thru Chiari decompression twice. She sd her initial surgery helped her headaches about a yr & she was willing to go thru it all again for any amount of time of relief again.
Hope yours go away soon!

I am going into my 9th month and this has been a real wild ride,in my dreams I was going to wake up and be forever healed.I would say there are a few that this might have happened to but I have’t met anyone yet.The journey for a lot of us is up and down,as for myself every time I feel I’m on the right track and see a light at the end of the tunnel it is the train,yiks! I’m in another slump and by now I keep the faith and hope for it to pass,all any of us can do is take one day at a time and know God is in charge.My wish for everyone on this site would be for all to be perfect in the days to come,that is our hope and is what keeps us fighting.I know things are improved and for now and for myself it’s been worth trying,no regrets just a lot of faith that things will keep getting better,that’s my prayer for us all.

Darmus,

I agree with what all are saying and please do not be so hard on yourself. I was looking for answers after my surgery( in 2 days July 16th I will be 1 year decompressed) and to be brutally honest I still have complications along with good and bad days. I do not say this to discourage you or to be mean rather to relay what one neurosurgeon told me during my search. HE told me that my symptoms did not develop over night and they will not disappear over night. He continued by asking me when my symptoms became the most noticeable and hard to deal with? I responded with about 3 years ago. He replied that is your approximate recovery time. I am not saying that if you have suffered for a great deal of time your recovery will take a great deal of time but overall some time is needed and please do not be excessively hard on yourself that can be a very hard road because we are often harder on ourselves than we are on others.

Take some time to relax as best you can, I know it is very to do so soon after surgery but try.

If you need anything or if there is anything I can do please do not hesitate to ask me

Mike

Bless you! I am 9 days post op and yea, it is soon just like you but I, too am regretting it. My surgery was deemed successfull but geez I would hate to imagine anything worse. My ears before would ring from time to time and for the last 9 days it seems like they buzz nonstop, so let’s just pray together that this will ease with time!

6 days is way too soon to tell anything. I had occasional ear ringing before surgery. But after my surgery my ears felt really ringy and stopped up/pressure off and on. It kinda scared me, I thought the surgery made me worse. I had some numb body parts that were not really that way before surgery. All of that resolved. I am 3 months post op and doing ok. Still have ups and downs. But at six days I was still recovering from everything surgery related. And some people say that 2 weeks is a turning point for most people but it wasnt really for me. That scared me too, but it's different for everyone. I had a turning point closer to 6 to 8 weeks. Some people wake up from surgery and feel like most or all of their symptoms are gone. It's not that way for everybody, it wasn't for me. But things have improved in 3 months. Some things I forgot about like I suddenly realized one day that I'm not nauseous anymore. I can concentrate a little better. My grown kids have noticed that my speech and thinking are better. I am not having as much shoulder pain as before. But it sure didn't happen in just a week. You need lots of rest and patience. Just take good care of yourself and give it some more time before getting discouraged.

Ear pressure just feels like I want to stick something in my ears to pop them. That's the only way I can explain it. As to why they didn't do the duraplasty, they just said I didn't need it.

TracyZ said:

Darmus,

I am very sorry you haven't experienced any improvement post surgical. May I ask why your NS decided not to perform a duraplasty? I have talked to many Chiarians that didn't have a duraplasty that had negative results and needed a second surgery. Beeba a Moderator on this Forum experienced the same thing. I am sure she will share her experience with you.

Would you please explain what the ear pressure feels like? I also had ear issues but not from pressure, from compressed cranial nerves.

Tracy

You haven't even gone a week yet. Relax. It can take six months to feel like yourself again.

Happy to report that at day 9 I am feeling worlds better! Still a little numbness in my left arm, but overall doing well. I have been off ALL medications for the past 5 days. Now I am just getting cabin fever from being stuck in my house!