Decompression Surgery Woes

Hi all! Firstly i want to say how thrilled I am to find this website as I don’t know anyone with the same issues so no one i know understands the pain and struggle.I have Chiari 1 Malformation with Syringomyelia (more details in my about me). I spoke with my neurosurgeon today and we talked about the posterior fossa decompression surgery. I have a great neurosurgeon in upstate NY although he is not a specialist in the field. He went over the info saying that the surgery has only a 70% success rate and thats between relieving some symptoms to all or most symptoms. He also told me thay4 theres a chance of meningitis or other infection because of the duraplasty. In my specific case he told me surgery entails removing 3in by 3in of skull, removing the first virtabrae (C1) and opening the dura and placing in a graft. He also said due to my 4 cysts that its higher possibility of future surgeries. So after discussing it he told me it’s a hard choice to make and to consider either living with my debilitating symptoms for the rest of my life or take the risks of possible surgery issues or that it wont help at all. I have two small children that are my whole entire life and I’m scared that what if the surgery doesn’t help or ends up leaving me even more disabled or worse case scenario, dead. If I didn’t have my kids to live for it would be a no brainer and take the chance. I’m so stressed and so scared and everytime I look at my kids I almost cry thinking “what if they didn’t have me?”. Has anyone had the surgery? If so, what were the outcomes and how long was recovery for you? What was the symptom difference? In your opinion was it worth it? Any stories would be amazing, either your own or someone you know. I’m at my wits end because no one I know understands how I feel and how extremely difficult it is to do simple everyday takes. Please also discuss what your symptoms are related to either Chiari 1 or Syringomyelia and if you are post operative, what your current and/or new symptoms are. Thanks so much and God bless you all! (For whichever God you may believe in, not meant to offend anyone)

Alex, again- welcome! It is an amazing feeling to communicate with others who understand and live daily with what you have been too. I’m sorry this is happening to you. I like what I hear you say about the surgeon you have talked to. BUT, I think it’s always wise to consult with a surgeon who sees chiaris as their specialty.

I had the full decompression 7 mos ago (skull decomp, duraplasty, and laminectomy).I had many symptoms of dizziness, dysphagia, incontinence, cognitive problems, vision disturbance, with a constant headache as the main symptom. Now, many of my symptoms are GREATLY relieved, including the headache. I still have head pain but I believe it’s because I have a cranial-cervical instability due to EDS- Elhers Danlos syndrome. Eds is a collagen-elastin problem that causes ligaments to become stretchy, it can affect any joint in your body including the ligaments that hold your spine/neck vertebrae in place. This is something you should be aware of, because if you have EDS you need to be screened for the instability before you have surgery (another reason to see a specialist). I am glad I had the surgery, but since the moment I got my diagnosis I was ready to have it done. I felt so horrible. If the surgeon had said, “we’re gonna take off your whole head and have it taxidermied for your mantle,” I would have have said, “great, when can we do this!”

As a general caution, decompression surgery is widely thought of as a way to arrest symptoms, to keep them from progressing. Many people have an improvement of symptoms, some have a an astounding improvement, but some have no improvement, and there some people on this site who get worse. It’s is my opinion that a person should be as thorough as possible with getting every diagnosis (eds, pots, etc) before going ahead with surgery to avoid any less than desirable outcomes that could otherwise be avoided with the right surgical procedures. There are statistics on typical outcomes and it sounds like your surgeon is right in there with his. It is a tough decision. I think most people just know when they are ready. Something else to consider is this, it is also generally thought that the longer a brain and spinal cord are under duress, the chances of residual symptoms after surgery are higher.

You do have time to explore all avenues, research, and to feel confident in the decision that you are making. You have babies, and as I’m sure the other mothers here can attest too, that makes your decisions a little more weighted. Pace yourself a bit so that you “know” when you know. Also, there is a member recommended doctor list on this site you can check to find a specialist close to you.

Bless you,

Thanks so much for your fast response! I have the same exact symptoms with some added ones like joint pain and passing out when I start getting dizzy as well as hypotension and other heart problems which I never knew was a symptom until I did extensive research. I’m familiar with the elhers danlos when I wayxhed the Mystery Diagnosis chiari malformation and ED episode (if you haven’t seen it go on YouTube and search: Mystery Diagnosis Chiari Malformation and it should pop right up). I am deffinitely going to get a second opinion, unfortunately because of my insurance kind of restricts me as I’ve contacted the specialists in NY and most dont take my insurance and only accept “straight medicaid” and unfortunately I can only get straight medicaid for 6 months “once in a lifetime” so I’m considering going to the chief of neurosurgery in Albany Medical Center which would be more realistic. …I’m definitely going to mention testing for other related issues because no prior neurologists or neurosurgeons ever mentioned that so thank you a lot for the advice! I find I’m the same exact way as the girl on that episode I mentioned earlier. I’m already madly in love with this website and it touches me how everyone seems to have eachothers’ back. At first before speaking with my neurosurgeon I was all for the surgery but now, not so much. And I know I shouldn’t think so negatively but my children are my whole life my world revolves around them and their happiness and safety and it just scares me for THEM not even myself. I’m trying to stay as positive as possible but I’m the type of person to over analyze every single thing and that’s my biggest downside (in some situations its my strength) …anyway I’m sorry for rambling on it just feels good to let it out, as my family just doesn’t understand, as great as they are. After hearing what you said and reading some posts I’m feeling a little more confident.

Don’t be sorry for venting, it’s healthy!

I had surgery 11 months ago and so far I have absolutely no regrets. All my symptoms have improved. My main symptoms were fatigue, dizziness, lightheadedness, tingling/numbness in my hands and feet, weird spots that would feel like they were burning for a few seconds, head pain and pressure, neck pain, shoulder pain, and being off balance. I still have some random issues here and there but it's very tolerable. My doctor told me that around 85% of people see some relief of symptoms. He stated that headaches seem to show the most improvement because they are directly caused by the compression. Other issues like the tingling and numbness are slower to improve and may not fully resolve because they are damage caused by long term compression on the spinal cord.

I definitely agree about the screening for EDS and other conditions. I think that plays a huge role in how well you recover and also as to why some people seem to do worse or show no improvement after surgery. I would also try to see a specialist to see what the risks of not having surgery are. With syrinxes the benefits of surgery may outweigh the risks as they can lead to long-term nerve damage.

I did not have a syrinx but I did have disrupted CSF flow on my CINE MRI. My NS said that while odds were low that I would progress to the point of death or paralysis by avoiding surgery I would never improve on my own and I would continue to decline. That was enough for me to take the leap. I just figured this is the only real treatment and it wouldn't be fair not to give it a chance. I knew there was a chance I wouldn't improve but it was worth it to me. I've had such an active year getting back into exercising, socializing, and traveling! Even if down the road symptoms return (hopefully not!) I think the surgery has been worth it for the time it bought me. I understand with small kids it's a bigger decision for you. My daughter was almost 18 at the time of my surgery so she didn't really depend on me very much and that made the decision easier.

Best wishes no matter what you decide and feel free to ask me anything about the surgery or recovery!