Chiari Malformation Type I without syringomyelia

[keilar]

I had a 18mm hernitation and had decompression surgery in November 24,2014. I stopped pain medicines within 3 weeks of surgery. I can move my neck but my pressure doesn't go away. The CT scan done at hospital after surgery showed everything fine but the pressure on the back of my head and neck don't get better. Is this normal? My neurosurgeon said it will be 6-12 month recovery from surgery but I am questioning whether the symptoms I had prior to surgery & still have will those go away? The feeling on my neck is like if I had a tight necklace on my neck and during the day it gets worse.

[selmaS]

  At this point I would think your issues are either surgery related or a related condition which has been underlying but yet unDX'd.

Scar tissue can form and limit ROM in your neck....there are exercises my Dr gave me to help prevent this....did yours?

Success of surgery is creating more space for CSF to floe if it was obstructed....and minimize any other obstructions that were present. It is not done to minimize symptoms....but we hope that will be the outcome.

Related condition have the same if not similar symptoms so it is not easily known which symptom is from which condition, so unknown conditions  being present give the illusion surgery failed...when the failing comes from find the other underlying conditions.

I know I had the same feelings post op....I will always feel like this...surgery may have helped some things....but I still have so many symptoms and pains....but with time they faded for me....I do have other related conditions and know if I push myself to do too much I will pay for it....but I can do so much more then I could have b4 surgery....and know my surgery was a success.

Hang in there, be patient and give your body the time it needs to heal....the outward incisions have healed....so your surgeon is done....but there is much more healing to be done inside....listen to your body for what is too much..

[keilar]

Good Morning,

I was in the hospital 3 weeks ago. I had lots of pressure on my right back side and neck. Both of my hands felt stingling. Can't sleep with one pillow laying down normal. They did MRI at hospital and apprarently everything seems normal. My neurosurgeon went to see me and he said flow is good and surgery was a success. I felt very irritated because success to them sounds like a huge failure to me. At hospital I asked him that if the bump in the right side I feel if that is permanent nerve damage from my surgery, he just looked at me and moved his shoulders and side he didnt know maybe. I said its almost a year now in November 24 that I had surgery and yet I have no improvement and then my neurosurgeon said it could be nerve damage but surgery was good and at this point nothing else I can do. I am thankful I am aive and I was polite to him because I guess in a way or another he did was any doctor would of done. But I am so frustrated this is messing up all my life. I asked if I can do any therapy and he said "no". That therapy won't do anything. It is a good hospital but it seems I got checked for everything in this world and everyone thought it was all in my head. I felt with no medicine, no solution, no hope. Last night I was from sofa to my bed all night with barely sleeping my right side so uncomfortable, tightness in neck and like a burning & pressure in right side. What do you think? IS this all expected to remain the same forever?

[selmaS]

  Keep a journal  to track what else may be causing these headaches to increase like that.....activities you did the day b4, how tired you were the day b4....and the weather, what it was and expected to be....big changes in weather will dramatically affect how you feel.....as will stress.\
Try to relax as best you can and save up on energy for a special outing so you can enjoy it more....

I know what you mean...no matter how much rest I would have I still had a HA or just plain fatigue.

[keilar]

I have another concern I have been resting more to see if it helps me a little but I am waking up from sleeping with a headache everyday. Some days stronger than others and I have days that it goes away pretty fast as soon as I am up others it last longer. Have you felt this?

[selmaS]

  6 weeks is too soon to be back to "normal" work wise....and surgery does not erase all remnants and or symptoms of Chiari.....so not sure how you were fixed????

No, I did not have therapy post op and I was told to but once my Dr saw me he said it was a good thing I did not go....I do have other related issues and one of them worsened post op and therapy would have made it even more pf an issue for me.

Listen to your body it will let you know what it can handle and when.

[keilar]

I went back at 6 weeks after surgery and work eight hrs. Five days a week. The neurosurgeon is the one that told me to sleep normal according to them the decompression fixed the problem and I should try to live normal. I guess to doctors once you have surgery a person needs to be back to normal. I have tried to be back in my routine but my body is not handling much.  Did you have therapy after your surgery?

[selmaS]

  At what point post op did you go back to work? How many hours do you put in?

If using a computer  try to elevate the monitor to eye level....so you are not looking up or down at the screen ....this may help with some of the issues. Also get up to just move a bit walk around the chair and then sit back down....sitting too long is not good for anyone. Do not raise your arms above your shoulders while you continue with this pressure issue.

Since being elevated when sleeping helps you may have an issue with CSF flow still....ICP comes to mind or POTS......

I do not know if the Dr that said to sleep "normal" is a Chiari specialist or a PCP....If not a specialist see about getting to one that is familiar with these related conditions.

[keilar]

Thanks for your response, it definately helps to hear from someone with my condition. I work so I get a lot of pressure during day while i sit in front of a computer. When i try to rest my head back on my office chair it seems like my right side is so swollen. I am trying to sleep more elevated even though the doctor told me to sleep normal. But when I sleep to low my pressure bothers me. For some reason it feels that the recovery is worse than my symptoms before. But I do have better days.

[selmaS]

  Hi....I know it can seem like things are not as good as you may want...but you still have a lot of healing to do...most of which is now on the inside and the nerves can take up to 2 yrs to heal..

Avoid things/activities that will cause you to feel worse and if you need to sleep.....sleep.allow your body to heal....the best thing you can do right now is listen to your body...it is telling you what it needs to heal.

As for the pressure..when do you feel it...when laying down, after you get upright....?? Or after  you walk up stairs?....

The numb feeling of your head is normal....I had what I called oozing till at 9 months post op from my incision...so what you have is typical....

I am 6 yrs post op and I still have days where I feel the need to sleep more....and most of the time it is after I have done more then I typically do....so my body is still adjusting....but will scream at me if I push to do more.....hang in there and if the pressure gets to be too much call your Dr again.....1 yr post op is also a typical time frame for a MRI...only those with other issues may get one sooner....

[keilar]

Its going to be 9 months on the 24th of august that I had surgery and last week I spoke to nurse practitioner. I explained that my right side has a lot of pressure and I asked to get another MRI. They said doctor will see me at 1year of surgery and the discomfort I have is very normal do to the fact that nerves need to rebuild again. My upper right back of head is like a numb/ bumpy sensation. There are days that I feel so much pressure on head and neck that I sleep for hours, my body at times feels so tired. Is this normal? I know before surgery they told me that not all symptoms of chiari would go away that they were just preventing the problem from getting worse but I feel bad and it seems to not improve

[selmaS]

  Do your symptoms feel to be the same or worse the b4 surgery?

Things should have shown some improvement...ask to see the Dr or if you can e-mail him/her directly.

[keilar]

I went to see doctor end of January for follow up after  surgery and I have emailed the nurse practioner about my symptoms but they insist is all part of the after surgery. But my right side doesn't have any improvement. I am thinking my only option will be another MRI

[Elisaandbucky]

I just caught up on your status and see that you are still struggling with the pressure. You will meet your 2-month mark and I hope you are able to handle your symptoms. When will you see your doctor? If he is close by, try to get into see him early. Are you able to rest during the day to make up for the interruptions in your nightly sleep? Lack of sleep certainly makes your pressure symptoms even worse. I hope you get to see/talk to your doctor soon, so that you can get some relief. I will keep you in my prayers.

[selmaS]

The area that was used for my patch was very sensitive post op...so that could be what is going on...I would suggest you talk with your Dr about this too....

Try sleeping on an incline, with your head elevated...it could be you are having fluid build up when you lay flat....

Again, let your Dr know about these issues.

[keilar]

Hi, lately I been feeling like liquid sensations inside my head on my right side I don't know if they took the piece from that side to create patch but can you tell me if you have ever felt this? My left side feels great but my right is sensitive and I still pressure on that side. Hard at night to sleep and it feels all puffed up when I lay my head back.

[selmaS]

  Ok so skin was harvested....I had that done as well....usually there should be no issues...but since you had a problem with the stitches....it could just go back to that.....

[keilar]

I think they took a piece from inside to create it

[selmaS]

  WOW...2 kids and working 40 hrs a week 6 weeks post op.....no wonder....doing too much too soon can also cause issues like yours to last longer then they would if you took it easier....

I could not imagine going back to work, for me  anyway....I do have other related issues that continue to cause me symptoms depending on my activity level...so, I do a little here and there....I am much older then you too...which can account for some issues for me....

Do you know what type of dura patch was used? Synthetic, bovine, cadaver? the only other type is tissue harvested from you.......

[keilar]

Thank you, is the pressure in the fron tof the neck normal? Have you experienced that? Also, when i had surgery the put a dura patch but didn't shrink tonsils the surgeon explained he made sufficient space and didn't need to shrink tonsils, is this familiar to you?

[keilar]

Hi thank you for answering. I saw my neurosurgeon like two weeks ago for post op and since they did a ct scan at the hospital he didn't think we needed an MRI yet. He said what I feel is normal is too soon and once November comes that is my year of surgery we can decide on MRI. This is all new to me I did so many MRIs and 2 ct scans before surgery. Since June last year my life was a nightmare. I am 29 and have two small kids I just don't see the day this all becomes the past.  On a daily routine I work 40hrs a week I started working 6 weeks after surgery.

[Elisaandbucky]

Hello. Your surgery was very recent, and you can expect some of your symptoms to continue for a while longer. Make sure that you do your neck exercises (were they given to you at the hospital?) faithfully to help with the strengthening of muscles that were affected by your surgery. My surgery was 4 months before yours and my neck pain is still pretty intense. Other symptoms have improved (nausea - which was really bad pre-surgery, headaches - they are a lot less severe). Keep a detailed symptom journal so that you can remember everything to report in upcoming appointments. I hope you find some relief from your pain soon. Keep current with your posting so people in the community can continue to help.

[selmaS]

  Hi and welcome to the Chiari forum.

It is normal to continue to have some issues post op and they can last longer then 6 to 12 months I know this bc I too had surgery.....my Dr told me recovery from surgery can take up to 2 yrs...as the nerves take longer to heal....and if you have Ehlers-Danlos like me, we tend to heal even slower....

May I ask did you have a dura patch, and are you scheduled for a post op MRI?

What are you doing on a daily basis activity wise?
And lastly did you have ALL related conditions ruled out? I know you said no Syringomyelia , so you had a MRI of your complete spine?