This is my first time posting. I am scheduled for a decompression on 10/7 and very conflicted.
A little background:
Currently 51 yrs. old and have had headaches since I was a teenager and throughout my adult life (always in the back of my head). About 11 years ago, I started to get a lot of dizziness/veritgo, tinnitus, brain fog and neck pain. Because of the dizziness/vertigo, I was sent to an ENT and many other inner ear specialists and misdiagnosed with Meniere's disease. I have had every crazy test (including brain MRI) and medication associated with that, but I never lost my hearing. Sooooo after all of this time they deduced that I could not possibly have Meniere's disease. I was sent to a Migraine specialist who diagnosed me with vestibular migraines and I have been taking meds for that for the past two years. I also have several bulging discs (C3-C7). After continuing to feel worse, eventually having to quit my job as a Physical Therapist Assistant, I begged my PCP to do more testing. She repeated another brain MRI and it came back that my cerebellar tonsils were descended, but not enough to classify it as Chiari I (4mm). She sent me to a NS anyway for a consult (I had 3 different ones). A Cine' flow was ordered which showed a 5mm Chiari and minimal CSF flow posteriorly. Two doctors agreed that surgery would help one said no - that was all about 8 months ago. I decided to forego surgery, basically because I was scared. The past 8 months have been miserable. I have all of the symptoms that I listed above on nearly a daily basis. I cannot make plans to do anything. I never know from one minute to the next how I will feel. What finally drove me back to the doctor is that I just found out that I am going to be a grandmother (which is the best news possible). This made me realize that I cannot go on living like I am, basically "Marking Time" and becoming more and more of a hermit each day. I want to enjoy my grandchild and my life again, so I had returned to the NS that I feel the most comfortable with and does the most of these surgeries. He repeated the Cine' flow and this time the malformation only looked to be about 4mm, and it showed slow flow both anteriorly & posteriorly, but the flow was apparently sufficient. Is it normal for these to be different every time? Is it positional? Dr. Aziz said he thinks the surgery will help, especially since I have tried everything else without relief (every regular and holistic treatment there is). The problem is, I feel is as though my symptoms are not as severe as many people who have the surgery (no numbness/tingling in extremeties and no Syrinx).
I am scheduled to go in a little over two weeks but keep having second thoughts. How common are the complications????
My NS explained the surgery to me as being one of the easier surgeries he does. He said for the patient recovery is painful but the actually surgery is pretty straight forward. Complications are possible with any surgery and are somewhat increased if the doctor decides to open the dura. However not opening the dura could set you up for further surgery down the line due to the risk of inadequate decompression. I was lucky enough not to have any complications other than an allergic reaction the glue that held my incision together. The most important thing is having a good doctor and feeling confident in the doctor. It's natural to have second thoughts because brain surgery is scary but now that mine is done I have no regrets and would do it over again if I had to.
Thanks Anglyn. I am glad that you are doing so well.
My doctor said exactly the same thing about it being easy for him but painful for me. He does not believe in not opening the dura because of possible further surgeries. He said he will make a decision on whether or not to cauterize the tonsils based on if they are moving and doing there job or not.
How bad is the pain? I have had many other surgeries and feel that I have a high pain tolerance, but do not do well with a lot of medication. How long before you started to feel good again?
I have an extremely high pain tolerance so my results are probably not typical but I wasn't in too much pain. My neck felt sore and stiff mostly. I actually only spent one night in the hospital and was able to make a short shopping trip for my prescriptions and supplies the next day. I was on valium, robaxin, and percocet leaving the hospital. I ended up not even finishing my Rx for any of them. Fatigue was the main thing for me. I was very, very tired for weeks. I felt ok other than being sore, I just slept a lot. I went back to work at 8 weeks and while I was still a little bit tired I was pretty good otherwise. From there I just kept feeling more and more "normal". I should mention that I have chronic mono and ankylosing spondylitis so some of my fatigue could be attributed to that.
Wow - that is all good to know. I am hoping to have a short stay in the hospital as well. My NS told me that the number of days in the hospital is basically up to me and depends on when I can take the meds by mouth instead IV. I would rather use ice for pain relief to be honest, but I am sure that might make my neck muscles even tighter.
Do you mind me asking how bad your symptoms were and what they were and if you had a syrinx?
Emmaline - thank you so much. Your post really helped. I love all of the more natural tips for pain relief and cramping. That is definitely what I would rather do. I was also glad to hear from someone close to my age and how well that you are doing.
I know deep down that I have to do this. I just need to keep pushing that doubt down that rises. I really want to start living my life again and be able to enjoy my grandchild that is coming in the Spring.
Thank you again.
Emmaline said:
You have to decide when you're ready...you know what your quality of life is now, it's certainly not going to get any better. The longer you wait the more damage can occur, some of which can't be reversed. I was basically in bed before surgery, so I had nothing to lose.
I've done well, it did take a long recovery time for me. 10 mos before I was able to go back to work, but I was 55 at the time of surgery. I did not have a syrinx. I was 3 days in the hospital, and the pain level wasn't too bad. I can't take narcotics either so after 5 days I went on aleve and did fine. A little Arnica cream on my neck a few times a day and I was good. I continued with 10,000u of vit D for healing, extra vit c, and magnesium supplements! Magnesium citrate is my best friend, It's great for relaxation, muscle cramps, mood elevation, and say goodbye to constipation!
I did not have syrinx. My main symptoms were dizzy/lightheadedness, extreme fatigue, tingling in the extremities, random places where it felt like my skin was being burned, off balance, neck, and shoulder pain. Headaches were present but actually more manageable than the rest.
Congrats on your soon to be grandchild...such a blessing!!
Just wanted to tell you I am thinking of you and praying for you to have a wonderful outcome...I had the same herniation as you 5-6mm on the MRI, no syrinx and the my CINE report was like yours!
I had no complications from surgery...no infections, no leaks...
Let us know how you are doing when you are able to get on the computer...oh, just got a thought!! Can a family member let us know how you are via your membership here? Just a thought because I have no patience!!
Hey..one more thing...You are not 51!!! OR that profile pic is at least 15 yrs old! I am 51 and if that is a recent pic..I am now truly depressed!!LOL You are so beautiful!!!
Thanks everyone for your encouragement and support. I am so happy that I found this website. I just got a call that my surgery was moved up to 11am instead of 4pm. I am happy about that, because 4pm is a long time to wait and contemplate things.
Lori - so glad to hear that you have had no complications and that your symptoms and herniation were similar to mine. Between you and Suzy, you give me so much hope. Also, Lori - thank you for the compliment, that was very sweet. Yes, I am 51 and the pic is not 15 yrs. old. Must have been a good photographer.
I promise to let you all know how I am doing ASAP.
I was diagnosed this past July, my headaches are almost debilitating and my MRI-CINE also showed a CSF blockage.I am scheduled to have surgery October 15th. I am scared and wondering if it is worth it. I have to have the surgery because as you I have also become a hermit and I will be a grandfather in January 2014. Surgery sure outweighs the alternative.
This is a great link to some articles about post surgical outcomes from our Let's do some Research Group. They are really great articles. I hope they help some and you both find some peace prior to surgery,
Came home today following my decompression surgery on Monday. Thing are going well. Them most difficult part is that I really cannot tolerate pain meds and do terribly with anesthesia (I was sick for a full 24 hrs. after surgery). I am basically using Tylenol, a muscle relaxor and ice. The back of my head is very sore - not going to lie. It is difficult to lay on it, but I am trying to work through it. Not getting much sleep, but I don't think that is unusual. I seriously may have my husband go out and buy me a recliner
Dr. Aziz did have to shrink my tonsils. They were very thick and plugging the foramen magnum. He showed me a pretty cool video he took after the shrinkage. Wow there was a ton of space and good flow. Currently, the skull based headache is gone. He said that hopefully within a week or so, I should be able to tell how much relief this will have given me.
Thanks for all of your thoughts and prayers. It all means so much to me.
Hi Debbie I have been praying for you… it is so good to hear from you! If you’re like me I can’t tolerate a whole lot of meds and Tylenol or Advil work for me and ice packs. You probably may want to ask for Klonopin it helps relax you and put you to sleep if you’re having a hard time. It works for me but you need a prescription for it. Ask your doctor.
Emmaline & Jozy,
Thanks for your replies. I am so happy to be home. Emmaline - unfortunately I cannot sleep in
any other position because of dizziness (which I hope eventually goes away).
Jozy - I have been on a small dose of Klonopin for 10 yrs. now. I was misdiagnosed with Ménière’s disease and have migraines and that was prescribed long ago.