Hi everyone I have chiari with a Syrinx and 2Doctors are saying surgery. I get my last opinion this friday. As you can probably tell I am terrified and praying someone will say something different. . I do have symptoms but I don’t feel they are severe enough for surgery. Is it true the symptoms will get worse and can even lead to paralysis. …Also if someone who have had the decompression surgery could walk me thru it I would appreciate it.
I had decompression surgery three weeks ago, although I did not have a syrinx. Although it has only been three weeks, I can honestly say it absolutely has changed my life. I still have an occasional “bad” day, but for the most part I am having great days. I never could have imagined life without a headache and although I have an occasional headache, it’s different. It’s not the vice grip, pressure headaches…it’s most likely just from surgery. I can hear without issues (most of the time)…my dad even made a comment that he likes my “supersonic” hearing. 
Of course, surgery isn’t for everyone. And there is a small percent that it does not help. But for me, I am so glad I had the surgery.
I was absolutely terrified before my surgery as well, but honestly not until the days was set…I guess it became real then.
I do still have some problems, but not like before…and everyday they seem to improve.
The research I’ve done has said, yes, it can progress and get worse. And it can lead to paralysis and death if left completely alone. But, there’s not a lot of research out there and everyone is different. But do realize, as it progresses, some of the damage done can become permanent. I’m not saying this to scare you, it’s just what I have found in my research in the last 4 months.
There are definitely people on here that know way more than me as well. Give some time, they’ll answer.
There is definitely no harm or problem with getting a second opinion…it is brain surgery after all.
Good luck with whatever you choose to do.
Thankd so much. How long were u in surgery and can you tell me what happened immediately afterwards. Did they have to wrap your entire head or just cover the incision area. What about the pain right afterwards and did you have vomiting. I want to know everything first hand if you dont mind… Thanks
My surgery was about three hours.
I was given the relaxation stuff and taken back and it took about an hour to get me ready, although I don’t remember any of it. Then the surgery was about three hours. After surgery, they told my family surgery was over and they were cleaning me up and then I went to ICU. It took about 45 minutes to an hour for my family to see me in ICU. I was in ICU from Thursday until Sunday. Then in a regular room until I went home on Tuesday.
My face was very swollen, and although they did clean me up, I still had the tape sticky residue on my eyes and my hair was stuck to my face. My dad got a wet wash rag and cleaned my face. I sorta remember it, but it made him feel better. It took several hours for the swelling to go away.
I remember very little from the day of surgery, but this is what my family told me.
I did not have any bandages other than my doctor put in a lumbar drain and that had bandages. My doctor used the medical glue on my incision instead of stitches or staples. He also only shaved a very small strip, maybe an inch wide. But I do know that the shaving stuff all depends on the doctor.
I did have some pain, but I don’t remember, but the nurses were good about giving me pain meds. The next day I was in quite a bit of pain and they ended up giving me a pain pump…I ended up having an allergic reaction to that pain med though, so they changed it to a pill.
I did have vomiting…I was nauseous for about 5 days…sorta. I was nauseous the day of surgery and the next day (Thursday and Friday). Then I was not nauseous again for two days (Sunday). Then again two days later and then two days later (Tuesday then Thursday). It was amusing to me as a math/logic person that there was a pattern to my nausea and vomiting.
Probably my biggest issue while in the hospital was the IVs. They had a huge issue getting a good IV on me. So much so that they almost put a pic-line in. By the time I got out of the hospital, both arms were black and blue.
I do not mind at all, feel free to ask anything, I will answer if I can. If I don’t remember, I will ask my family.
Thank u so much for this information. I am sure I will have more questions later.
Feel free to ask anything. And if I think of anything else I’ll let you know as well.
Sharon, I am sorry you are facing this. In my experience and reading, if a surgeon is pushing for surgery and you have a syrinx you should take the advice seriously. For most of us surgery is optional, but when you add in the syrinx that changes things. Yes symptoms can get worse and yes can lead to Paralysis. I’m glad you are getting several opinions, pick the one you feel most comfortable with. For me, I had very minimal pain post op, was in the hospital for four days, stayed in town in a hotel for four more days then flew home. I was home from work for 2.5 months before returning full time. The surgery requires a long recovery. You can expect to be extremely tired for many months out. It will be the most important thing you do to rest. By rest I mean little to no house cleaning, cooking, outings, ect. You need some patients with yourself, cause pushing yourself will only set you back. It took about 7 months for me to start feeling like myself again. Will have someone to keep an eye on you post op? Help with meals?
Prayers and hugs,
Jenn
Jenn yes I will and thank you.
A syrinx really ups your risk of paralysis so most doctors will rightly push for surgery! I did not have syrinx but opted for surgery anyhow and I had a very good surgical experience. I was only in the hospital one night. I stayed in a hotel across from my NS office for 4 nights. I was off work for 8 weeks. Pain was minimal but I did get tired very easily. I have seen many improvements post-op and have no regrets! Best wishes and keep us posted on your appointment this Friday!
Only one night in hospital Wow thats awesome. Did you have the vomiting as well for a few days? My symptoms are getting worse now since setting the appointment this friday for another opinion. I will let yall know what he say Friday. Thanks
No vomiting for me luckily! I had the slightest bit of nausea right out of surgery but it went away quickly!
Awesome.
@Cole y were you in ICU instead of regularroom
My doctor automatically sends Chiari surgery patients to ICU for at least 24 hours.
However, I was in there from Thursday until Sunday because I had a lumbar drain in as well. They would not let me go into a regular room until 24 hours after the lumbar drain came out. The drain came out Saturday so Sunday I went to a regular room.
My doctor believes in putting a lumbar drain in during decompression surgery because he said it will help with the headaches initially. So that your brain is not inundated with CSF that it should have been getting all along. It also helped ensure there was no CSF leak after surgery.
What is the lumbar drain for? How is it put in and taken out?
I see sorry didn’t read far enough.
He put it in during surgery, so I'm not sure how it went in. He set it to drain at a specific rate to keep the headaches away.
My doc took it out while in the room. He said I might feel a tug or something, but the only thing I felt was the tape coming off. I did not feel it at all.
Ok thanks again for all the information.
Anytime
My family said my surgery took about 4 hours. My doctor took about a 1 inch strip of hair. I went to ICU and puked for the next 24 hours. I had a Lupus flare and things went badly from there. I spent 11 days total in the hospital. I still live on Zofran, referred to as "Zofriend." I have noticed a ton of improvements. There are still some things that probably won't change. However, the pressure in my head is normal and I can function more on my own.
Get as much information as possible, it is your life and your head! If you decide to have the surgery, have a support system in place, get a wide variety of pillows, and read Beeba's list. Each person will have a different experience and be able to provide only what they endured. Some situations are far more frightening than others, as if the idea of having your head cut into isn't scary enough!
Sending prayers your way,
-M