Way-Post-Op Complications

I had my decompression, craniectomy and C-1 laminectomy (all pretty typical I think) in October 2010 (almost two years ago). I was 35mm herniated at the time of my surgery, with no syrinx. 2.5 months after my surgery, the back of my head swelled up with CSF pretty bad. Whenever I moved my head (even from giggling), it caused excruciating pain in the front of my head (left forehead region). My husband called 911 and when the paramedics came, my PB was 170-122 (I'm usually about 110/60), so they rushed me to the ER. They gave me CT scan and confirmed that the fluid was pushing upward, basically shoving my brain upward and it was shoving into my skull. They treated me with Morphine and monitored me for a while, then let me go home for the weekend and I was told to follow-up with my NS on Monday. I had no shunt put in at the time of surgery and since my pain was under control, my NS asked me to wait until 18 months had passed before deciding whether I wanted a secondary surgery to put one in. I've had swelling off and on since and I basically learned to gently press the fluid downward and the fluid would go into my neck. (I know it sounds gross, but the pain that night was worse than when I had my children; it was worse than anything I've ever experienced.) When the 18 months were up, I decided against having a surgery just to put a shunt in place. I've still been filling with fluid, but it hasn't been as bad as that night.

It was really hot yesterday. and I walked into the air-conditioned house and I got a real sharp pain on the left side of my head. I went to the bathroom and my head started to hurt right behind my right eye and my right neck started to spasm and feel half-disconnected (like it did pre-op). I took some Tylenol, Pseudoephedrine (thinking it was a sinus headache coming on), a muscle relaxers and I took a short nap. When I woke up, the sinus pressure was gone, but the pressure and half-connected feeling in my neck remained. It seriously feels like my head is too heavy for my neck - a sensation I haven't felt in almost two years (I'm literally holding my head up with my hands). It's not really painful, there's just no strength in my neck at all. It feels like there's a lot of pressure there too. But my head isn't swollen with fluid right now, it's actually flat and hard (which does happen sometimes). I'm fine when I lay down, but when I get up the pressure is tremendous and I'm so dizzy, I feel like I'm going to faint. Feels like my eyes start bobbling around.

It's Friday and I don't want to waste time and money at the ER. What do y'all think? Have any of you post-op'ers experienced anything like this?

[selmaS]

  Hi and welcome to the Chiari forum.

What u describe sounds a lot like cervio cranial instability.,..like we r bobble heads, our neck can not hole the weight of the head and it feels like it will just bob all over if we do not hold on to it.... so bumpy car rides can make us feel really bad....

Were u dx'd with Ehlers-Danlos too?

[MandyJo07]

. The symptoms you are describing Is exactly what I am feeling. Can't hold my head up, extreme pressure, which causes headache and eye pain. Since Tuesday morning, as long as I am laying still, not completely flat the pressure is not unbearable but as soon as I move it's the same old, feel like I'm going to black out feelings. Also started getting numbness and tingling in hands, feet, and face again. I'm currently in the hospital and waiting to have a MRI done in the morning. My last surgery was in 2008. Since Tuesday it has got progressively worse, I would get it checked out.

[selmaS]

  Hi and welcome to the Chiari forum.

What u describe sounds a lot like cervio cranial instability.,..like we r bobble heads, our neck can not hole the weight of the head and it feels like it will just bob all over if we do not hold on to it.... so bumpy car rides can make us feel really bad....

Were u dx'd with Ehlers-Danlos too?

[selmaS]

  I was not aware u were in the hospital,. I hope u get answers for what is going on with u....please keep us posted : )

[Sug_97]

No... it took me 10 years of MRIs to be diagnosed with the Chiari in the first place, but there were no other diagnoses made. I was diagnosed in late Sept. 2010 and because I was already very symptomatic (I had gone 5 years where I'd lose my ability to walk or use my hands for weeks at a time.) I had the surgery just a couple of weeks later.

[Sug_97]

Your last surgery was in 2008? How many surgeries have you had, if you don't mind me asking.

[selmaS]

  Deff ask them to check u for Ehlers-Danlos Syndrome as it could be a big part of ur pain issues, I know as I also have it.

I took me my whole life to get dx'd....so I know how u feel....

  Please keep us posted

[MandyJo07]

I've had two surgeries, I am home now and apparently I have a Syrinx which is to blame for my most recent symptoms. I have a follow up appointment Sep 10.

[Sug_97]

How did you just find out that you have a syrinx? Can they develop post op?

When I had my surgery, they pulled up my dura and didn't find one, so I just assumed I was in the clear.

[selmaS]

  A syrinx would show on a MRI and can be in the cervical, thoracic or lumbar spine so having a MRI of the complete spine helps rule out a syrinx.

[Sug_97]

I've never heard of Ehlers-Danlos. I do have joint problems and have for years, but I just figured I wasn't exercising enough.

My cervio cranial instability is still problematic, but it seems to come and go (not constant like it was before my surgery).

It always bothered me that the only option my NS was giving me was a surgery to run a shunt from my head to my thigh, then it dawned on me, he's a neurosurgeon and not a neurologist. I've never even seen a neurologist. Anyway, I emailed my NS and told him about my problems. I'm having another MRI done on 9/23 and he said once he sees the MRI results, he will see if there are any other options (like seeing a neurologist and a ENT specialist), other than surgery.

The ENT (ears, nose, and throat) specialist is because I've had fluid coming out of my left ear for a long time now. I saw my general practitioner about it and he just said he sees no sign of infection. But because I could feel it dripping every day and can stick my finger in my ear and my finger is wet, I didn't give up! I Googled it and found out it is common with Chiarians.

It's very odd how so many things that seem unrelated all seem to always come back to one thing, chiari. =(

[selmaS]

  We do have a EDS group here on MedHelp with plenty of videos and links to info, u may want to check it out-

http://www.medhelp.org/forums/Ehlers-Danlos-Syndrome/show/417?controller=forums&action=show&id=417&camp=msc

[Rylanesmom]

Have they tested the fluid coming out of your ear to see if it's csf fluid?

[Sug_97]

No, I have an MRI this Sunday and they're going to reassess me.

[Viva001]

Have you had a cervical mri?  That was how I started this whole process, a severe cervical spinal compression, which led me recently to Chiari.  

Now, my whole neck c1-6 has been decompressed, as well as the posterior fossa, but this is the most normal I have felt in many years.

My NS said that brain compression & neck compression go together ~50% of the time. (He didn't say, but my guess is opening up one dam is going to increase pressure downstream).
There is also such a thing as too Low csf pressure.

Good luck.

[Sug_97]

I honestly don't know if I've ever had a cervical MRI. I know I've had them with and without contrast before. It took so long and it was hard to breath because the cage piece that held my neck still was too tight on my chest, so this time I've requested the bigger open machine. My NR ordered it, but he said it doesn't usually get as good of images.

So you're spinal decompression gave you Chiari? My NS said I was born with it. I thought the decompression was the trimming of the tonsils. How do they decompress the your whole neck fro c1-6? They removed my C1 and said that was the laminectomy.

[Sug_97]

I watched those videos on The Driscoll Theory. I'm not sure I'm understanding the whole EDS part of it and how that might apply to me (but there's so many types). I do have all the dizziness and stuff associated with POTS, but I've never had a tilt done before, so I don't know if it's my BP causing it or just my chiari.

I'm so tired of dealing with Chiari and it's toll on my family. It's been almost two years and I so wanted to come out of the surgery normal. I hurt so badly sometimes, but the truth is that part of me just wants to suck it up and bear it sometimes so my family doesn't know. I don't know if they have it in them to see me through another surgery.

[Sug_97]

So I had another MRI on Monday and it showed a significant increase in CSF gathering at my surgical site AND some fluid within the cerebellum but he didn't see pressure on the brain or hydrocephalus at the time of the scan.

My NS said that he doesn't think that it's dangerous, but he can understand the discomfort I may be having. He's given me the following options:

A. Manage the situation conservatively and do nothing unless things continue to worsen. (ie. drugs, as I've been doing)

B. Try "tapping" the wound with a needle as often as needed to reduce the fluid pressure and facilitate healing. (I've had this done before, it *****, but it's less evasive than the surgery.)

C. Surgically implanting a shunt in that area to continuously drain the fluid from the site down into your abdomen where it can be reabsorbed. (Last time he said my thigh, at least my abdomen is closer.)

I'm not sure how fluid is "within my cerebellum" and what if any problems that can arise from it. I Googled it and ended up on a page about Alzheimer's, Parkinson's and MS (not sure I'll Google it again). I'm actually surprised that they found a build up of fluid from the MRI because while we were on the way, I said to my husband that I felt a little pressure but I didn't think I was swollen at all. In fact, on a scale of 1-10, I would have rated my swelling as a 0-1, but I definitely have nights where I'd rate it as a 9-10.

[selmaS]

  The swelling can change especially with the position u r in....and times of day just as ur BP changes so with this.

2 yrs is a long time for this to be still going on....

May I ask as in re reading this thread I did not see it posted...did u have a duraplasty? If so what type of patch did they use?

I am still going to say get checked for EDS, and a CSF leak.....it may be the patch.

2 yrs post op u should have no more swelling or issues with leaking unless they have not addressed the issue....the patch if there was one, and if u have rejection issues due to something like EDS...

If meds like Diamox r not helping...u need to either get a 2nd opinion or live like this which I am sure u do not want to do and should not have to,...

[Sug_97]

Yes, I had a duraplasty with a synthetic patch (that's all I know about the patch).

Initially, my NS said not to push, pull, or lift anything over 2lbs for two weeks, so there wasn't pressure on the patch. After the two weeks, I could continue to feel the pressure when I'd lift things (even things as small as a liter of water or a full shampoo bottle) and I believe that continues to be the issue.

It's funny that you mentioned BP, because there's one other thing that feels like it's causing swelling (other than pushing, pulling, or lifting) and that's stress. When I get stressed, the back of my head swells and I feel pressure throughout my whole head (like a circular vice is compressing the whole thing).

A few have brought up EDS and while the bottom part of my hips seem to go out sometimes and minutes later, pop right back into place, I don't have the skin issues that seem to be associated with it. One of the most frustrating things about CM1 is that the symptoms and/or connected problems are so wide spread, it's hard to know what may be associated with it and who outside of my NS to talk to about it. The minute I mention anything to my GP that may be connected to my CM1, he says, "You need to talk to your NS about anything regarding your Chiari." But then with my NS, I feel like he only looks at things from a surgical aspect.

I've never been offered or told anything about Diamox. Interestingly enough, it says it's used to treat: upset stomach, headache, shortness of breath, dizziness, drowsiness, and fatigue) of altitude (mountain) sickness. I have stomach problems and have been waiting to see a GI specialist since last month. For 14 years they've said I have IBS when I complained of diarrhea and abdominal pain after having my son. More recently I was diagnosed and treated for C-diff, but I continue with stomach problems that make me weary of the shunt in my abdominal cavity. And all the other problems related to Diamox, I definitely have and I know they're related to my Chiari. The only meds they've given me are Percocet & Valium right after the surgery and Tylenol 3, Motrin, and Valium since. I take Motrin once/twice every day of my life, but it does seem to help a little.

You're right... I don't want to live like this and shouldn't have to.

[Sug_97]

BTW Selma... I hope you realize what an incredible blessing you are to people. I've seen your posts in different threads and you are not only knowledgeable, but you're responses are encouraging and full of love!

[selmaS]

  aww thanks for the kind words....it means a lot.

I just hate to see someone in pain or not getting the right care.....and the hip issues can be EDS u do not have to have all the symptoms to have it...that going in and out is called subluxing....my shoulders and hips do it all the time especially at night when I sleep on my side, it hurts in the AM....

SO I really feel u should have this looked at...and do not tell ur GP it is related to the Chiari just say ur hip is hurting and feels like it is out of the socket...he will do MRI's and what ever other testing he feels and mayb u could suggest a Rheumatoid Dr that may  know EDS as u heard this could be something to consider....

Back to ur pressure HA's and BP...stress will up ur BP sp POTS or something like ICP could also be a possibility....but a few have had issues with those synthetic patches too....

So u may want to take the copies of ur recent MRI and send to a Chiari specialist and explain ur concerns and symptoms and see what they say.

[Sug_97]

Good advice...

I emailed my NS about if he could tell if the patch was okay and this was his response:

"You really cannot visualize a patch very well on MRI. Sometimes when we operate for a fluid collection like this, we will try to strengthen the patch and block any potential leakage sites, but putting a shunt into the area at the same time is probably a good idea as a "belt and suspenders" way to guard against future leakage."

I also called my medical services coordinator and changed GPs. My new doctor has an interest in Chronic Medical Conditions and wants to see me in an hour! I can't tell you how much it would mean to me to have a GP that actually cares.

Wish me luck!

[selmaS]

  Wishing u Luck !!

Please let me know how this goes....I know how important it is to have a PCP that is well informed and willing to learn too.

And I have one, and it works well for me,

I do not want to agree with the shunt instead of checking the patch....not sure how, but I know others that went back in as the patch failed so they had to have an idea b4 going in,...

  Ask about EDS when u go, it is one of the best ways to see if the foreign matter is the issue.....

[Viva001]

Just wanted to affirm Sug's comments above.  Thanks, Selma; you give so much of yourself.
Maybe someday I can be as loving.

And I majored in college counseling :/

[selmaS]

  Someday? U already r...thanks for the kind words <3

[Sug_97]

So the new doc didn't want me as a patient. =(
He says my problems are beyond his knowledge.
He recommended that I get a PCP/GP at the same Redwood City Kaiser (where my neurosurgeon is).

In light of that, I've decided to have the second surgery. They're going to check and reinforce the patch while they put the catheter in my surgical site (for the shunt).

Here's the wish list I shared with my surgeon, hoping that the surgery fixes:
cervio cranial instability (bobble head feeling)
dizziness
vertigo
pressure in head
pressure in neck
tension in neck
neck spasms
pressure in ears
fluid from ears
intolerance to loud noises
hearing loss
pressure behind eyes
lightheadedness
brain fog
decreased mental stamina
difficulty finding the right word
impaired concentration
fatigue
depression (probably from feeling bad so much)

[selmaS]

  I am so sorry that the Dr would not take u, but best that he admitted it was not something he could handle.....

  Please keep us posted on the Surgery Date thread when u have a date....

  And sending u all the best....and a few ((hugs))