Multiple Back Surgeries and CSF Leaks

It has been a few years since I have been on here. I have had multiple back surgeries that either resulted in or were to address spinal fluid leaks. Now I developed another spinal fluid leak in the lumbar that has resulted in multiple balloons of fluid collecting in the lumbar and in front of the spine in the abdominal cavity. After the third surgery last year in which I was in ICU for 3 weeks and in the hospital for 2 months, they were amazed I was able to walk again. Now they are not wanting to do another surgery as they say the risks are too high. This leave me with headaches, double vision,tinnitus, nausea as well as the back pain and pain in both legs. I have had a total of 7 back surgeries and the last one a plastic surgeon worked with the neurosurgeon to rebuild the lower back so they could patch the dura leak. As this is not my first rodeo and by no means am I in the worst situation although life is less than pleasant, I am asking if anyone has dealt with long term CSF Leaks due to back surgeries and if the leaks ever healed by themselves.

I have searched under several topics here but nothing specific so far. They won't risk a blood patch either after the last surgical patch last year that landed me in ICU for 3 weeks, they said the next surgery would require them disconnecting the muscles to my shoulders in the back to restructure the muscles down my back and the recovery would be long and difficult. Just too many surgeries and too much damage. They will only look at surgery if the balloons break or I loose my eyesight. I try to stay positive and look for hope where I can find it. Thanks for your rely.

Thanks for the encouragement. My PM Dr decided to put me on Topamax. We will see if that helps. Everyone has been waiting to change my meds until I saw a neurologist but it looks like it will be 2 more months before that will happen. No one wants to deal with work comp. The nausea and headaches have been brutal and I have not eaten for several days and managed a cup of coffee and a ginger ale yesterday. They tell me to drink coffee to help stimulate the production of spinal fluid. I am going to try a mountain dew today as the coffee is hard on the stomach. We all have our battles and you certainly have yours as well.

Straydog, They have me on Fioricet which has caffeine in it but still wanted me to take in more caffeine. I suspect that one of the balloons that contain the leaked spinal fluid broke open and as my body absorbed the fluid the nausea and headaches increased. I am waiting to get in to ask for Zofran as I have heard others have had good luck with it. My PM has decided to switch me to Topamax but I am still waiting for it to be filled. Due to work comp, it takes me a week to get my meds approved and filled. My PM talked me into 6 injections and then 6 ablations earlier this year and I believe that was a big mistake as it probably caused then spinal fluid leaks.

My previous pain doc said there was nothing he could do for me and he had no idea as per meds. I did suggest a pain patch which has helped some. He moved his office and it ended up being a 3 to 4 hour trip to see him. So I found one closer and when he stated he wanted to try ablations and assured me he would not be close to the dura patch I consented. I have talked to many people who have had the injections and ablations and some have great results others it can be a nightmare. Many are in between who either get a short reprieve no no result for loss of pain. I guess that is why they say they are only 30% successful. I agree that many pain docs are doing anything they can to keep from prescribing pain meds. Here in Arizona, several doctors have told me that state guidelines are stricter that federal guidelines for prescribing pain meds.

Yes it is an option. My PC has tried CBD with me with no relief. She said that if CBD did not work at all, MM is probably not going to be as effective. My issue with MM is I will not be able to continue with any pain meds after starting MM. My PM Dr. states that they receive their permission to prescribe pain meds by the federal government and MM is still illegal at that level even though it is legal in my state. That is why they either have you stop pain meds when you start MM or shortly afterwards. It is either one or the other. The bigger issue is it limits your ability to travel. I have kids in 3 states and one state has recreational MJ, one has MM and the other has neither. If you travel you cannot transport any product with you and it is difficult to get MM in another state on a short term basis. So when you travel you can end up with neither MM or pain meds.