Post C3-C4 ACDF Surgery with CSF Leak

The drive is worth it. After bad experiences elsewhere, we go to Mayo Jacksonville and they have an onsite hotel plus inexpensive ones 10 min away. Here they look at your home location in scheduling.
You probably need multilevel fusions which in the correct hands will work. Remember recovery is tough and can take up to a year. Make sure a doctor refers you to Mayo.

@jkichar
It definitely sounds like you need decompression surgery c4-c5 and c5-c6 to relieve flattening of spinal cord and myelopathy symptoms. I had c5-c6 done and may need c6-c7 done due to new herniated disc into spinal canal and pressing against spinal cord and causing symptoms. The sooner you can get the right surgery by a great surgeon, the better!

@jkichar I'm sorry you are caught in this dilemma of a poor surgical result. I'm wondering why they did not address the levels of C4 through C6? With full disc collapse at these levels, it isn't going to get better, and that will collapse the space in the foramen where the nerves exit between vertebrae. It must be a rule perhaps because of insurance coverage about 90 days under the attending surgeon. You may want to call your insurance now and at least discuss with them and check that you will have coverage for Mayo. Do you have a surgeon in mind at Mayo for a consultation? Which Mayo campus are you considering The most spine specialists are at Rochester where I had my spine surgery.

@jennifer0324 I have been so confused over this surgical result. He reviewed MRI and even when the pain management doctor he referred me to for nerve block, reported back that he was concerned over MRI results, nothing was discussed. I am shocked that nothing further was completed for surgery. I will see what he says tomorrow just to hear his thoughts of new MRI and then just kindly say I have to think things over. As soon as my 90 days is up Mayo in Jacksonville said they have it noted that I will be calling for appointment with their neurosurgical department. I don't know if I request who I want to see or if they will just schedule me with someone. I have looked up a few of the surgeons at Jacksonville location. I will keep you posted to what is said tomorrow.

Please keep us in the same boat updated and good luck.

@jenniferhunter @robertwp
Well the surgeon had nothing to say. He reviewed images and said there was nothing really to address. Asked if I had done PT. Of course I have, he ordered it to begin with. He said maybe if I did trigger point injections. I told him that he had sent me to Pain Mgmt and the doc did a nerve block that did not work and the doctor he sent me to said he didn't see that he could help me and he only saw surgery as option with all the disc levels. Well, my surgeon still doesn't see issues. He said to try PT again and that should work and I don't need any further follow up with him. He doesn't even look at my info before coming into the room. UGH!!

@jkichar I'm sorry you are getting the run around. However, I am not surprised. This surgeon doesn't want you as a patient and is being dismissive. I have been in that position myself with having had carpal tunnel surgery when the surgeon missed that I also had overlapping symptoms from Thoracic Outlet Syndrome which is a nerve compression in the shoulder. Even after I had an official diagnosis of TOS, and went back to the hand surgeon, he refused to allow physical therapy. If you are pointing out a "mistake" so to speak, they avoid you as much as possible. The hand surgeon also hid in his office (I had already seen him there) and had his staff tell me he was not there. I was also refused help by 5 spine surgeons before I came to Mayo because they didn't understand how to connect my symptoms to my spine images. With the complete loss of disc height in a few of your vertebrae, that represents some advanced spine deterioration, and he may not be confident in his abilities to fix that. I'm sorry you are caught in the 90 day blackout for medical care, but you need a more advanced surgeon for an expert opinion.

I would highly recommend my surgeon at Mayo Rochester. He is excellent, as well as being kind and compassionate. I will answer questions if you have them. You may request that he review your case when you apply to Mayo for an appointment. It will be different when you get to Mayo, like a breath of fresh air. If you want to request Dr. Fogelson, write him a letter about your symptoms and history of your spine issues and send it with your request. Of course, you need to describe your last surgery and how you had problems afterward, and that the surgeon did not address all the issues. Repeat what the other pain doctor said about your need for surgery and that you are being referred only to pain management or PT. Having difficulties getting proper medical help may help you when you describe all of it and that you are not getting medical help. Do not be judgmental about your opinion of your surgeon but be honest about your symptoms before and after his procedure. Surgeons know when surgery is a failure and let them be the one to make that judgement. This keeps you as an innocent patient only seeking help from a real expert. In other words, don't bash a doctor to another doctor. That could be offensive. Keep everything in the effort to get help. A surgeon who takes a difficult case and resolves it well will feel good about helping you. Set up your experience to allow this to happen. If you need to vent, respectfully do that on Connect instead, so all of your communication with a new surgeon is positive. It is worth traveling to get to an excellent surgeon. You can apply to any of the Mayo campuses, however, there are a lot more spine surgeons at the original location in Rochester.

My surgeon, Dr. Jeremy Fogelson
https://www.mayoclinic.org/biographies/fogelson-jeremy-l-m-d/bio-20055624