CSF Leakage after MVD Surgery

41

I've had 10 so far. They are definitely not fun. The numbing medicine burns so bad, but it's nothing like when the needle hits a nerve and the shock goes down your leg. Ugh! (But when it comes to the point that you are looking forward to getting one because you know you will feel better after, it's time to do something more drastic. lol) And yes, if you have normal intracranial pressure and they do a tap, you will get a tap headache that is pretty horrific. I can't believe you took a test the day after. Ouch!

I take Diamox and Spironolactone to try to keep the pressure down. I've been on them both for over a year. The side-effects are not as bad as Tegretol, but they still stink.

This is why I worry that my chances of a post-op CSF leak might be higher. So far I can't find anyone on this site that has intracranial hypertension (too much CSF, or pseudotumor cerebri) AND has had a MVD. If you know of anyone, please have them contact me. I'd love to hear their story.

shindig said:

Wow, so sorry for your situation. I can't imagine having more than 1 spinal tap. I had one 2 weeks ago and never ever want to do it again. The numbing injections hurt, and the muscles hurt from being poked for days afterwards.

I had to take a final exam for school the day after they took 4 vials of fluid and miserable doesn't begin describe it. Driving over bumps, and turning on the way there gave me the worst migraine. I stayed in bed for 2 days afterward.

I don't do the ER, unless I'm unconscious and somehow end up there. That has to be terrifying to have leaking fluid. I wish you the best.

42

I am not sure if I have what you are asking about because I don’t remember if my doc used that terminology. He said he thinks I have a condition where I produce more spinal fluid than the average person. I have had two surgeries to try to repair the leak. The bulge (build up of csf) just gets larger. I am having surgery once again on September 26th to try once again to repair that and to go back in and see why the first mvd did not work. The TN came back with a vengeance in January and they changed me to Lyrica and stopped the Neurontin. I will also have to stay in the hospital again for 5 days with a lumbar drain. I really like my surgeon but just in case this doesn’t work does anyone know a great one on the east coast preferably in the Carolina?

Honestly I am scared and am dreading this surgery more than any of the others just because I’ve been there done that and I don’t like it.

Thanks for all the comments, good wishes, positive thoughts and prayers.

Cathy

43

That's terrible Kathy!

What he is saying, producing more spinal fluid than the average person, can lead to what I was talking about. If the fluid (CSF) has nowhere to go, then it increases the pressure on your brain. In your case, the fluid is obviously leaking out of a "broken" area in your dura. I wonder if you always had it or if you are producing extra because of the leak? Anyway, I really hope they fix it for you. And that it fixes your TN.

I'm unfortunately in NJ and not in the Carolinas. I can't recommend my nerosurgeon 'cause I haven't seen him yet, but his name is Mark McLaughlin. He studied under Dr Jannetta. He seems to be very interested in TN and how to help patients with it. I hope he's as good as he sounds. I'll keep the site posted.

Please keep us updated on what happens Kathy. I'm sure it's very scary, but you just have to keep thinking that maybe this time it will help. :)

44

Thanks. Dreading it but I really have no choice. My next big day is Sept. 26th. I’ll let ya’ll (that’s southern for you all) how it goes. My neurosurgeon is Dr. Sunil Patel and I really like him. I think he’s done his best but I really think the first doc did a botched job and he’s just trying to fix someone else’s mistake. The first surgeon just kept telling me it would reabsorb into my body and one day that spot would be flat as a pancake. I listened to that nonsense for about 6 months before I finally got an appt.with Dr. Patel. After one look Dr. Patel said it would never go down on it’s on. Just praying this next surgery is the last.

45

Hi Cathy,

You really have no choice, so I wish you good luck!! I had MVD surgery near when had yours and I had a CSF leak too. I will pray for you. I have since learned that CSF leaks are very common with MVD. It makes me wonder just how many of these CSF leaks occur and how many are noted in medical journals or if anyone is keeping a record of the percentage chance that CSF leaks occur with MVD surgery. The MVD patient should be told of this complication.

The CSF leak was not diagnosed until 11 days after the MVD even though I said it felt like there was a leak and fluid was draining where it should not be in the area of the incision. I had clear but very oily to the touch liquid come out of my nose when I stood up and tilted my head. I had terrific pain on the top of my head when I stood up. I also had another complication of critically low potassium which almost killed me. I, like you, felt I had really no choice but to have surgery to repair the leak (which is actually good because there is no agonizing over the decision) and let the surgeon who did the MVD repair the CSF leak which was in the dura that was exposed when the piece of skull was removed for the MVD. I did not like the idea of the surgeon who botched the first operation getting a second go at me and be paid for it, but I was too sick to get a second opinion. So 3 days after diagnosis I had surgery again. The pain of the CSF leak surgery was a bad as the MVD surgery. The CSF operation worked as the surgeon said he found a pinhole in the dura where the incision was made(yeah!!), but the MVD did not work (darn!!!).

Don

46

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Don said:

Hi Cathy,

You really have no choice, so I wish you good luck!! I had MVD surgery near when had yours and I had a CSF leak too. I will pray for you. I have since learned that CSF leaks are very common with MVD. It makes me wonder just how many of these CSF leaks occur and how many are noted in medical journals or if anyone is keeping a record of the percentage chance that CSF leaks occur with MVD surgery. The MVD patient should be told of this complication.

The CSF leak was not diagnosed until 11 days after the MVD even though I said it felt like there was a leak and fluid was draining where it should not be in the area of the incision. I had clear but very oily to the touch liquid come out of my nose when I stood up and tilted my head. I had terrific pain on the top of my head when I stood up. I also had another complication of critically low potassium which almost killed me. I, like you, felt I had really no choice but to have surgery to repair the leak (which is actually good because there is no agonizing over the decision) and let the surgeon who did the MVD repair the CSF leak which was in the dura that was exposed when the piece of skull was removed for the MVD. I did not like the idea of the surgeon who botched the first operation getting a second go at me and be paid for it, but I was too sick to get a second opinion. So 3 days after diagnosis I had surgery again. The pain of the CSF leak surgery was a bad as the MVD surgery. The CSF operation worked as the surgeon said he found a pinhole in the dura where the incision was made(yeah!!), but the MVD did not work (darn!!!).

Don

47

Our story sounds a lot alike except for I have a large hump in the back of my head where mine puddles. Has anyone else had this? I will try to post a pic of it when I can.

Also I think the duraseal is what he used last time along with fat from my abdomen.

48

Every case seems to be different regarding TN or TN2. Its probably that way with CSF leaks.

I did not have a hump on back of head. I had the sensation of a "mushy" feeling about an inch behind my lower ear, a soft flesh feeling where there was bone before. I believe that is around where the circular hole was made in my skull and the metal mesh plate was attached, but maybe it was a little below that. I had a draining feeling in my throat, especially when I applied a little pressure to the area about an inch below that (which I did not do for at least a week after surgery), which felt like it relieved my headache pain temporarily and was draining the area. So I think mine was draining away, while yours is not. Sometimes when I stood a little clear liquid would run out of the nostril on the side the surgery was done. The liquid was very oily or viscous to the touch, not thick but slippery. When a hospital doctor touched the area, it felt and sounded to me like the metal plate was moving. Still this doctor (not the surgeon) did not diagnose the problem as a CSF leak. No fat was taken from my abdomen, I believe the doctor just resealed the leak, still a painful surgery.

All I can advise for the CSF leak is get medical advise (a second opinion if possible, I did not get a second) and then go for it.

Cathy Collum said:

Our story sounds a lot alike except for I have a large hump in the back of my head where mine puddles. Has anyone else had this? I will try to post a pic of it when I can.

Also I think the duraseal is what he used last time along with fat from my abdomen.
49

I did, I felt like one of those balloons that you use at partys to shape animals for children. It was like a tube and the lump could move around (sort of sloshy) under the skin. But with the medication to lower the pressure, less leaked and it eventually (4 months) healed. The lump went down after about 6 weeks.

Judi

Don said:

Every case seems to be different regarding TN or TN2. Its probably that way with CSF leaks.

I did not have a hump on back of head. I had the sensation of a "mushy" feeling about an inch behind my lower ear, a soft flesh feeling where there was bone before. I believe that is around where the circular hole was made in my skull and the metal mesh plate was attached, but maybe it was a little below that. I had a draining feeling in my throat, especially when I applied a little pressure to the area about an inch below that (which I did not do for at least a week after surgery), which felt like it relieved my headache pain temporarily and was draining the area. So I think mine was draining away, while yours is not. Sometimes when I stood a little clear liquid would run out of the nostril on the side the surgery was done. The liquid was very oily or viscous to the touch, not thick but slippery. When a hospital doctor touched the area, it felt and sounded to me like the metal plate was moving. Still this doctor (not the surgeon) did not diagnose the problem as a CSF leak. No fat was taken from my abdomen, I believe the doctor just resealed the leak, still a painful surgery.

All I can advise for the CSF leak is get medical advise (a second opinion if possible, I did not get a second) and then go for it.

Cathy Collum said:

Our story sounds a lot alike except for I have a large hump in the back of my head where mine puddles. Has anyone else had this? I will try to post a pic of it when I can.

Also I think the duraseal is what he used last time along with fat from my abdomen.
50

Judi,

I've read about the those hydragel sealants and seen how they do it. It's pretty amazing. I thought that's what all surgeon's use now, but I guess I'm wrong. I've been reading so much and watching so many surgeries that I might have this next part confused: according to what I read, 5% of patients who get a MVD will have a CSF leak. But I don't know if that's with or w/o the use of a hydragel sealant. I don't know if that is the standard. I wonder.

51

I don't want to be an alarmist, but if 5% of MVDs get CSF leaks, that is very serious. Csf leaks in the skull can easily lead to brain damage. Would like to know more from an MVD surgeon.

The operating notes from my MVD surgery state the following:

With wound was irrigated, then the dura was closed with running and interrupted Nurolon sutures. A Valsalva maneuver confirmed watertight closure, however, in addition, DuraGen and DuraSeal were used to complete a duraplasty. Titanium mesh was molded and fitted over the defect [what he means by 'defect' I don't know] and secured with 4 mm screws. Then acrylic cement was used to fill the interstices and allowed to harden. The muscle, muscle facia, subcutaeous and skin layers were closed separately and sterile dressing applied.

The dura was closed watertight and a Valsalva maneuver did not show a leakage, in addition duraplasty was done with DuraGen and DuraSeal and the skull was reconstructed using titanium mesh and cement. An indocyanine green dye angiography was done to confirm there was venous and not arterial compression.

The operating notes from my CSF leak operation stated the following:

Operative procedure: After induction with general endotracheal anesthesia, prophylactic antibiotics given intravenously and the patient was positioned in the lateral position, wound side up with an axillary roll and head fixed in a 3-pin Mayfield headrest in the lateral position. Following clipping, sterile preparation and draping, the previous retroauricular incision was reopened. [The MVD wound scar was reopened] The sutures were cut and a retractor inserted. The screws securing the previous cranioplasty were loosened and the cranioplasty was removed. However before this, it could be seen that there was also a pinhole in the cranioplasty where CSF pulsated in and out. [So material was pulsating both in and out of the skull all this time! Not a good situation] Upon opening the cranioplasty, the dura was explored and there appeared to be a pinhole, wherein in a slow leak of clear CSF could be seen. Cultures were obtained and sent for intraoperative Gram stain and microbiology. A graft of cervical fascia was obtained and sutered to close over the[sic]. Valsalva maneuvers were done and it apeared that there was no further leak. However in addition, DuraGen was placed over the defect followed by DuraSeal. Then acrylic cement was molded to fit the defect and held in place with a titanium mesh that was screwed into the posterior fossa craium. Thes was allowed to harden. Additional Valsalva maneuvers were done but no CSF leak was identified. The wound was copiously irrigated, then closed in layers. Sterile dressing was applied.

Findings: Operative findings: There was a pinpoint leak of CSF from a spot along the closure line of the dura. Thes was sututered closed by duraplasty using a graft of muscle fascia, DuraGen, DuraSeal, molded acrylic cement fitted into place with a titanium mesh.

I hope this was helpful. Anyone who has an operation is allowed a copy of the Operating Notes or Operative Report. The surgeon should be glad to give it directly to you. They will probably ask you to make a simple written request for their records. You could probably ask the hospital for it instead of the doctor.

52

Thanks for sharing that Don. That was very interesting to read. I cringed a little at the thought of the CSF going in AND out of your brain. If you don't mind my asking, did you ever show signs of infection? I can't remember if you mentioned if you were still in the hospital or if it had been a few weeks before the signs of the CSF leak started.

So it seems that the way to fix a CSF leak [after trying other non-surgical ways] is to basically go back in and redo what they had originally done. I wonder if getting a leak in the surgical site has to do with not enough sutures and/or sealant being put in the first time? Or maybe not letting the gel sealant dry long enough before closing up and adding the cement? I'm just guessing here.

This is definitely something I will be talking to extensively to the surgeon. I'm still scared that my issues with excessive CSF and intracranial pressure will make me more likely to get a leak. I was actually wondering if they can just put in and keep a lumbar drain in for a day or 2 to prevent a leak through the sutures or a hole from occurring. I'm willing to lie there like a dead fish for a few days than having to have surgery again. We'll see what happens.

53

Hi, I had mvd in may last yr then developed a cfs leak which was eventually confirmed in march this yr had op on 1st July to fix cfs , 4 weeks after op while sitting on the floor to tie my daughters shoelaces I felt a pop and have now got another cfs leak which is being repaired on Fri . I’m hoping it will be 3rd time lucky as the surgen is putting a spinal tap in for aweek to see if that helps , good luck and hope your pain free x

54

Best of luck to you. I hope it works this time. Who is your surgeon?

Judi

Debbie Moore said:

Hi, I had mvd in may last yr then developed a cfs leak which was eventually confirmed in march this yr had op on 1st July to fix cfs , 4 weeks after op while sitting on the floor to tie my daughters shoelaces I felt a pop and have now got another cfs leak which is being repaired on Fri . I'm hoping it will be 3rd time lucky as the surgen is putting a spinal tap in for aweek to see if that helps , good luck and hope your pain free x
55

Debbie, I hope that your csf issues are cleared up on the third try. - Don

Ihold, I had signs of CSF leak while in the recovery in the hospital but they were not picked up by the staff for various reasons that are too complicated to go in to. I never had an infection from the CSF leak. I was too sick and on drugs to really figure out why it was not picked up. The tell tale sign is that I had a little amount of CSF coming out of my nose, but thought it was simply a little runny nose. I also had air in my head that was not figured out until a day or 2 after leaving the hospital when I went to an emergency room and they did a CAT scan. I don't know if air in the head occurs with all CSF leaks or not. I also had critically low sodium which almost killed me. If I had not gone to the emergency room when I did, I would have died. So it was complicated. There is no way I could wait any more to see if the CSF leak would self heal, after 14 days I was extremelyill.

If you want to put your surgeon on the spot, ask her how many csf leaks have occurred in her past MVD cases. A full discussion about your concerns about CSF issues before the surgery date should help in easing your concerns.

- Don

56

On the 1st surgery to fix the csf leak they put in a lumbar drain for a week. The place in my head finally went down. Almost 3 weeks later I too felt a pop and it came back. 2 weeks from today I go back for my 2nd mvd and third try at repairing the leak and will once again have the lumbar drain. Really dreading it this time. 4 surgeries in less than 2 years and really praying for relief this time. I am blessed though because it will be totally paid for since I have met my out-of-pocket deductible. Thanks for all the support and for sharing your experiences. Wishing all a pain free Thursday!

57

Debbie: Did they say what they will do to repair it. Did they take fat out of your abdomen or are they going to? They have done that twice to me. The first time it held for three weeks but I had the lumbar drain.The second surgery to repair the csf leak they just did the repair and let me go home the next day. They did not do the lumbar drain and the bulge in my head never went away. I am having surgery two weeks from today. I just need this to work. I don't want to think that I am going to have to do this any more. I'll be thinking about you tomorrow.

58

I met with the neurosurgeon yesterday and voiced my concern of having a higher risk of getting a CSF leak due to my increased levels of CSF and brain pressure. He told me that yes, you are at a higher risk for a CSF leak if you have pseudotumor cerebri. He said that in my case, he is going to put a lumbar drain in before surgery and keep it in for 3-4 days to reduce the chances of a spontaneous leak post op.

So at least I know that my risk of a leak is higher but that he is going to be proactive about it. I go in for my MVD Nov 5.

59

Best of luck. Wish I had had the foresight to do my homework, and ask about that first. I hope all goes smooothly. Judi

60

my surgery has been put off till Oct. 10th since I am suffering with a sinus infection. I will let you know how it goes.

Thanks!