1 level ACDF with complications - CSF leak (spinal fluid leak)

[Dc_indi]

Hi! I'll try to be as brief as possible but I am looking for anyone who had a diagnosed CSF leak post cervical ACDF and can offer advice. Here's my synopsis: Had radiating pain and myleopathy in my left arm around 8/10/2013. Went to the emergency room and was diagnosed with herniated disc at c6/c7. Proscribed Medrol dose pac, narcotics and muscle relaxer. The steroids helped but pain returned when course completed. Saw three different spine surgeons who all recommended surgery. MRI showed large ruptured disc and osteophytes directly into the left side of c6/c7. Second medrol dose pack given, worked for 8 days but then pain returned. Was scheduled for ADR on 9/19 but insurance (BCBS of Mass) would not authorize procedure. I had been told by all three surgeons that the best chance of full recovery was to do the surgery as soon as possible - at this point I had been unable to lay down for more than a few minutes without severe discomfort in my left arm. Progressive weakness (left triceps reflex absent, starting to drop things, etc) had me moving forward with acdf instead. ACDF with hardware performed 9/27 at c6-c7. Immediate pain relief in arm post-op and able to lay flat for first time in 6 weeks with no arm discomfort. Yeah! sent home post op with instructions to not lift anything greater than 5 lbs. Soft neck collar given for comfort - but told not necessary. No other restrictions. (I think this surgeon is a lot less conservative than others - but said 1-level, young, healthy bones, non-smoker- not necessary). Had a very hard time swallowing for the first four days and was troubled with SEVERE headaches. I get headaches after taking opiates for a few days so by day three post op, so assumed that was the cause and switched to just Tylenol. I figured the headaches were just from the opiates - but they continued after switching to just tylenol. First post op appointment 1 week post surgery - headaches were better and steri-strips removed.
Doctor and I discussed symptoms and noticed that I had excessive swelling under my incision. He suspected CSF leak into the soft tissues and told me to watch for increased swelling, changes in voice or sever headaches but otherwise just come back in a week. Did not suggest bed rest and was hopeful that leak would seal itself on its own. I have a large lump (CSF Fistula?) under the incision. It appears to have gotten a bit larger, but that may just be because the other swelling in my neck has gone down and it's more readily seen. He did not want to drain it because the incision is healing very well and hoping to avoid the risk of infection. I still have headaches, but they are low grade. Occasionally have chills and dizziness and the spins.

Questions:
1. Has anyone else had a CSF leak, specifically in the cervical spine area?
2. What was the recommended treatment? In my research I've seen that bed rest is often recommended and am surprised that my doctor did not mention this.
3. If repaired, what was the method and how long did they wait to go in to do this?

Thanks very much for your help!
Karin

[mmglobal]

Karin, I'm so sorry that you are having to go through this.

Just last night, I was speaking to a woman who's been dealing with large and progressing syrinxes for more than a decade. There are CSF leaks associated with them. When it's worse, the lower CSF volume generates severe spinal headaches. While you both may have CSF leaks your situations are quite different.

How certain are they of the CSF leak? Is there a way to prove it? Are there other conditions that have a similar presentation that can be ruled in or out?

When observing surgeries, I've seen CSF leaks about 5 or 6 times. It's pretty amazing to watch. One was fairly early in a 10 hour surgery and it was surprising to see the steady flow for hours as your body produces it in abundance. The entire volume is replaced every 6 to 8 hours (if I remember correctly.)

Has there been any talk of a "blood patch". In 15 years on the spine boards, I've seen this discussed many times. My understanding of it is that they inject your own blood into the epidural space. The clotting properties of the blood causes the defect in the dura to seal. I'm not a doctor, so please take everything I say with a grain of salt.

Good luck to you! Please let us know how you proceed. I look forward to reading good news!

Mark

[Dc_indi]

I'm off to see the doctor this morning. I know about blood patches but my doctor has not suggested anything yet. The only option we discussed was a wait and see... The thought is that CSF leaks in the neck are known to patch up themselves more readily than the lumbar area. I think he made the diagnosis based on my symptoms and the size/amount of swelling... But i will ask him if it could be anything else. He is trying to avoid going back in in order to reduce the risk of infection. I'll post an update After my visit but really appreciate that you took the time to respond!

[mmglobal]

Why is it a CSF leak and not a seroma?

Mark

PS... you are very welcome!

[mmglobal]

I just spoke to a spine surgeon that I have great respect for and briefly described the situation. Understand that it is impossible to get anything meaningful beyond some simple ideas. These are not recommendations! There is no way to evaluate a case based on a simple internet dialog.

CT myelogram would certainly rule csf leak in or out. This is not risk free and would not be the first choice. Extracting some of the fluid would allow them to determine what it is and should incur less risk and radiation than the myelo.

Good luck!

Mark

[Dc_indi]

Hmmm...wow. My doctor never mentioned seroma. It certainly feels/looks like it could be a seroma comparing it on google! I think he only based csf leak based on my symptoms... Terrible headache, bobble head feeling, nuaesea, sensitivity to light..... The best way can describe it is like the feeling when you are hanging upside down and all the blood rushes to your head....except i was just sitting upright. Migraine like... very weird. The doc took another series of xrays today and also visually inspected my incision ( which looks pretty great if I do say so myself!). He said the swelling was considerably less... Not something I could really tell, but since my symptoms are improving and it's definitely not a lot larger.... Doc Still believes best case is wait and see. I think any specific diagnosis would need for the lump to be aspirated/drained and in the absence of worsening symptoms, the potential increased risk of infection makes it undesirable.

I do worry about it becoming infected just sitting there or calcifying... It's big enough to be unattractive. I did determine that he believes the leak is closed.... Otherwise the swelling would have gotten progressively worse and that's why he did not order bed rest.

I wish I had posted this last week as the suggestions you provided have been great and would have given me a bit more peace of mind. Thank you again for your time and feedback!

[mmglobal]

Before I write this, I must reiterate... I'm not a doctor. I am just asking questions that I'd ask if I were with you, talking to your doctor. I am NOT suggesting that you have meningitis. I would suspect that you don't. In my experience, the symptoms would be so severe that you'd be in the ER and not capable of being on the computer.

Is it possible that the swelling under the incision and the severe spinal headache symptoms are two separate problems with two separate causes?

Would it be possible for a CSF infection to present with these symptoms that don't rise to the totally incapacitated level that I've seen in the meningitis cases I know. remember, I'm a layperson, not a doctor!

Is it prudent to rule out an infection of the CSF? If so, how? If the answer is a spinal tap, could that be combined with some contrast that would also identify a CSF leak.

Note... I would NEVER want an intrusion into the spinal canal or dura that was not absolutely necessary!

Again, these are just question and I may be all wet... Please don't horriblize over what some faceless bozo writes on the internet! While this may be a good place to get ideas and for spine patients share their relevant experiences, this is no place to get medical advice.

Good luck!

Mark

[Maria]

In your situation post a surgery I've had a severe spinal fluid leak related headache 3x. The first time was when I was 16 and had to have a spinal tap. It was gruesomely painful for over a week.

The next 2 x were post myelogram even with all precautions taken such as drinking large amounts of fluid post procedure and bedrest for up to 24 hours.

Unfortunately I had to be admitted to the hospital both times post procedure and lay flat in bed for a full 7 days with a catheter in place for urination and since I was unable to defecate in this position I had to have the help of Mag Citrate on the 6th night and was finally able to use the toilet that 7th day and be released to go home.

Anytime before that if I even attempted to raise my head a little I felt like a building was sitting on my head and the headache was completely and totally debilitating.

So I wonder if you were able to be on COMPLETE bedrest such as I was if you would heal in the time I did. My Neurosurgeon at the time would not authorize a blood patch for me yet I was never given a reason why except he felt it better to hospitalize me and it worked both times.

Good luck with whatever is found out and however you proceed. Maria