Ok so I have been through the surgery and my md told me I was good so I kinda put everything to the back of my mind and went on with my life. Well I am due for my second MRI and I have been researching and I keep seeing there is no cure but the way my surgeon talked I wouldn’t have anymore problems. Could someone please explain this to me?
Krissy,
Many Members tell us that their Neurosurgeon tells them after their decompression surgery they are healed. That is not true at all. I am very sorry. Surgery is only a treatment to restore CSF flow and repair or reconstruct any structural issues. Some Chiarians have very positive surgical and post surgical experiences. We also have Members that do not have positive surgical and post surgical experiences and symptoms. All Chiarians are different. I hope and pray you have a very positive post op life. Have you had any post op symptoms? How long ago was your surgery?
Tracy Z.
My surgery was in may of 2012. Since surgery I have had headaches but they r not as severe as before and occasional leg pain but nothing like before. However, I have noticed since August my headaches are increasing to daily or every other day and the severity is starting to increase. But over the counter mess still help. So in the long run what does chiaris do to the body? Is it a death sentence? I am starting to get scared. I really thought all this was behind me. I have been a nurse for 5 years and have 2 beautiful kids and thought I was going on with a normal life. The surgery was awful!!! After that I don’t know if I could do it again, and now I have bad neck pains and stiffness but I assumed this was normal.
Krissy said:
My surgery was in may of 2012. Since surgery I have had headaches but they r not as severe as before and occasional leg pain but nothing like before. However, I have noticed since August my headaches are increasing to daily or every other day and the severity is starting to increase. But over the counter mess still help. So in the long run what does chiaris do to the body? Is it a death sentence? I am starting to get scared. I really thought all this was behind me. I have been a nurse for 5 years and have 2 beautiful kids and thought I was going on with a normal life. The surgery was awful!!! After that I don't know if I could do it again, and now I have bad neck pains and stiffness but I assumed this was normal.is this why I'm still so tired all the time?
Krissy,
Chiarians have normal lifespans. I have never met or talked to one person that doesn't have some post op symptoms or side effects return. There is research to back this up. I will try to find it again. CM Surgeries are horrible for most people. I personally would never even consider having cranial/brain surgery again for any reason. I was recently diagnosed with POTS (Postural Orthostatic Tachycardia Syndrome) It has many of the same symptoms as Chiari. I have been fighting exhaustion myself over the past few weeks. POTs is genetic and can be brought on by an accident. I fell before Thanksgiving & think that is what set mine off. I wish more than anyone that surgery would heal us. Do you have a NL or Pain Mgmt Dr. I am so sorry you were misinformed, Since all Chiarians are different it is impossible for me to guess about your future health, I will recommend Arnica Gel for Muscle pain and Stiffness. I have been on ever Medication since 9/2005 & m amazed at how well the Arnica works. It doesn't have any side effects or interfere with any medications. I use it on my neck 3 times a day & have even used it on my forehead and other areas of my head to help with headaches,
I know that this is frustrating for you. I had my surgery in April of this year and not much has changed I actually have more musle pain than before. My dr keeps telling me I should be better that the surgery was a cure as well. I was told that my symptoms may get better over time. I also have problems with balance and movement which are about the same. I know this is not very encouraging but that there are others out there going though it.
This worries me ;( I finally get a diagnosis, my NS tells me after surgery I will be cured. Is he wrong?
I was told that provided the surgery fixes problems with CSF flow then headaches should go away as well as a lot of my neck pain. He said other issues took longer to go away and some would never fully improve. He says the surgery is a treatment and not a cure. The majority of patients will see their condition improved, however some people do not.
So far 11 weeks post-op I feel a good bit better than before. I still have some bad days but mostly I have better energy and less pain. I still have problems with tingling and numbness. If I get overly exhausted I will have neck pain so you do have to take it easy and be mindful that you still have chiari after surgery.
Finallyhavedx- I assumed I was too until I started researching and from what I have found out there is no cure. The surgery alleviates symptoms only. But u can’t repair the damage that was done