Well its been almost a year since I had my surgery. I dont know if its normal to keep feeling pain. Back pain, neck stiff, back in the skull. I had what my doctor said was a new a improved method I dont have a ziphead, he used some kind of glue. I only take ibupruphen and tylenol for the pain. Some sleeping pills and at times anxiety pills. I had my last MRI on april and have a follow up next october but he didnt order another MRI and Idk if its normal not to ask for a new one. I called because some atuffs I wanted to ask but I was told I was being dismiss from the case.
My question is or questions… How have u been doing after the surgery? What changes have u notice? Sequels? Thank u for reading and I hope to get some feedback because I have noone else to ask went to tumblr but got scared as hell about things I read
Hi, Glory! Basically surgeons do surgeries, make sure their patients go through the recovery without complications, and that the surgery took care of their concerns. They may have more knowladge about Chiari, but as far as treatment goes, surgery is all they can do.
Did you have physical therapy? I had the surgery 3 1/2 months ago. I recently started physical therapy. The therapist said a few things worth to remember:
- after the surgery, your neck muscles are traumatised and they can’t hold the neck properly. that creates tension in the wrong muscles that can cause stiffness, pain, even obstruction in blood flow. This can also happen from living with pain- the stress tenses muscles up, causing all kinds of problems.
umm… for me it’s 1:30 in night, so I can’t remember the other “thing worth to remember”.
As for the outcomes after surgery- it really is different for everyone. It depends on how bad your condition was before the surgery, and if you got any nerve damage. Maybe you can ask his office to recommend a neurologist and/or pain doctor to get to the bottom of what is causing your pain and how can you manage it.
Best wishes,
Kristine.
Hi! Thank you for taking your time to reply and for the advices. I havent get Physical Therapy yet. I have more issues along with Syringomelia and Chiari. A cyst that comes from my Spinal Cord, I had a tumor in my back that made some damages and I have implants all over my back. So I have been struggling with alot of stress on my life. Family and friends are tired already of me, most say I dont look sick and that I haave to get over it, surgery was a year ago and that I need to let it go and move on…and got some xrays. I have been dealing with a lot of things lately. I dont know where to continue Im tired of doctors, and meds and People ar
I was informed to get an MRI every year no matter what. Just to be sure things are staying where they need to be. However, I also have bulging discs in my neck have a syrinx still on my spinal cord and got permanent nerve damage down my right arm from when my brain dropped the last time before my surgery. So it could be case specific. I know one thing though, if you feel more comfortable getting an MRI so you know where you stand. …then find a doctor that will do right by you. To ease your mind.
Thank you! I think I will request an MRI I have lots of issues with my body. Dealing with neurofibromatosis and dermofibromatosis. I have my follow up appointment in 2 weeks. And I wanna ask you guys… Some friends wanna take me on a trip becausee of everything Me and my partner have been dealing with for the last years. My doctor said I could make the trip that there is no problem if I get on a plane. Its been only a year, its a 3 hours on a plane trip plus 3 by car… Is it safe? I havent do much since the surgery other than go to my follow ups out of town, going out to restaurants when I feel fine but idk what
To do.
Glad i can help. As far as travel. My new hobby is traveling and enjoying life!!! Lol. Although I always bring plenty of ibuprofen to keep the swelling down depending on the elevation of the area I’m going to or if I’m going in to the mountain area. Always keep your meds in the containers as well so you don’t get any grief. That sometimes messes with me. But I don’t let it stop me. I just got back from hilly parts of Indiana this weekend, and flew to Hawaii less than a year ago. In 7 months it’s off to Ireland I go. I figured I can lay on the sofa for a week once my trip is over. …if I over do it. Lol be safe and most of All HAVE A BLAST
Thank you so much. I will go and forget about everything. I hope things are going well even tho I dont feel fine as how I used to 5 years ago. But Im used to. And I should avoid google btw I freak out when I read stories related to chiari. 
Yeah, the dreadful I feel okay, but not like I usr too. That is my new normal, and try to adjust as well. I think it is hard for us because we want to be at 100% and know that we can never do ALL the things we use to. It is an adjustment for sure. One that I battle all the time. And Googling anything will see to it that you get all the horrible parts to your question answered and sure suck the life out of you. Lol Google is not nice for that. I do use Wikipedia if I want to know what a word is or the meaning of it is that my doctor has given me. Try it out. Most of the time when you ask Google a question the wiki answer is listed. You just have to weed through the negative"your doomed" junk. Lol
Ohhh I know, the burning sensation, the feel as if what is something more there? Why do I get this weird sensations all over my body. I used to play soccer and do sports I cant anymore but Im lucky to have an amazing partner with me that have been beyond suportive. And our puppy. Sometimes we just go out and have dinner because is all I can manage to do. Sometimes we go to parties. Good days bad days never an amazing day but I get use to and try to live the best new life I manage to keep
Today I felt down horrible, I was asleep had taken my pills at night and woke up to go to the restroom it was early and super dark and I dont even remember what happen but The last thing I remember was my partner next me alcohol in hand. I was bleeding from my mouth and had a huge cut on my chin and lips, I needed stitches. Hut my neck go figure. And passed out two times. A local doctor made a Tomography and he said things looked fine. He wasnt my surgeron he is out of town. But I didnt get a cervical MRI because of the syrinx. Im going to see my surgeron next week But Im so sad and worried. Im scared of the outcome. And what if I go back steps 
I hop everything goes ok. And they have answer for you soon that don’t leave you just going through the motion. Awww it must be in the air. I have been having the worst kind of couple of months. They put in a spinal cord stimulator to help me with my nerve damage down my right arm in April. They had to do it twice cause they (Cleveland clinic) messed up the first surgery. Well ever since then now it’s like things are just getting worse. Always fatigue, nausea and even dry heaving. However, I called them Friday because I noticed how it I look down for a period of time my legs get cold and go numb. They were like “how far away are you?” I told them "too far for them to admit to their hospital, and asked what I should do. So now I have to go get xray done asap. And they are going to try and fix noninvasive. Ugh, I have gotten to the point where I just to my boss after this week, I can only work 1 day a week. Cause it is taking everything I have to work and then takes me days to recover. Now that I made this decision I feel like a failure.
And this may be a weird question but why didn’t they so a mri because of the syrinx?I do believe that I have had them done before. But I am noticing on here that none is getting the same treatment at all. Seems like these doctors are winging it case to case.
Sorry to hear about everything going on with u. The kast MRI was in april and I they told me I wont be needing another one for this appoitnement. Is there a way I could cause damage to the surgery cuz of this fall? I mean can it make things comeback again?
Thanks for the kind words. I think I would definitely tell them about the fall. Let them know exactly what happened. Cause you never know. I hope everything goes well at your appointment.