New Chiari Symptoms

[LRW72]

I have Chiari Malformation and have had two surgeries in the past year and 1/2. Recently, I have had other symptoms such as sudden ear pressure in both ears with nausea. Eye pressure where it feels my eye is going to explode, and head/back pain. I had another MRI a few weeks ago, but it was "all clear". The thing is, ALL of my MRI's have been clear. None have ever shown blockage/flow problems, etc., but when Diamox is taken, symptoms were relieved, and surgery was performed. The first was decompression and there was a lot of compression that they discovered once they got in there. I started getting bad headaches again a few months afterwards, and eventually started blacking out and having extreme pressure. Again, MRI clear, but Diamox worked. Then I had a duraplasy, there was an enormous amount of scar tissue from the first surgery which was causing the severe symptoms to return. That was in July. Since November, I have had an increase of symptoms again. Now I have the severe symptoms I listed above. Since the MRI is "clear" they want to pass me off to yet another neurologist. I want to know who is listening who actually knows about Chiari, and believes that I'm really having problems again. I don't know what to do.

[*Stormy*]

I hope you do too!! I am glad that you are going to get copies of your scans, when I realized the importance and got a hold of mine, I was amazed on how much I wasn't told!!!  I now get copies of everything (even blood tests) so frequently I know my results b4 I even see the Dr.

I have had the same experience with NL...until I finally gave up on finding one. I'm not sure if this would apply to you but b/c of my gait difficulties I ended up seeing a physiatrist (NOT psychiatrist!! lol) and I was sent to a neuro-rehab as well. I have found those people to be a million more times helpful than a NL and I have made a huge amount of progress since being in their care. Just a thought in case it can help you at all!

Carolyn

[LRW72]

Thanks for your comments/questions. I am trying yet another NL (my third, since the others don't know much or anything about Chiari).  So far, the last one was just a "pill-pusher" in my opinion. The more drugs he could give me to mask the symptoms, the better for him. I was just thinking yesterday that my next step would be to get copies of all my scans, so I appreciate your agreeing with that. I'm researching IH now to come in prepared for my next appointment, so I hope this NL will listen. Each day/week, I seem to be getting worse, which is very difficult when I have a full-time job and kids. I will definitely take your ideas to heart as I am continuing on my "journey". Hopefully I will have good things to post, soon!

[*Stormy*]

Hello

You sure have been through a lot!! As I was scrolling through the posts a couple of questions went through my mind.

Have they ever done a LP to measure the pressure around you brain and spinal cord? I know it isn't ideal with Chiari patients to do one, but you would think that they would be looking to see if you are dealing with chronic IH.

Also, even though they said it is "all clear", that may just be referring to no CSF blockage. Have they every mentioned whether you have too much CSF? Like in PTC?

I know even though I have been told that my CSF flow is now good post op, I still have days of high pressure feelings and headaches. My theory is that we were producing much more CSF before, to get things past the blockage, so now we have trouble regulating.

Also, there is the question on whether there was some damage to your brain stem if you brain was compressing it before surgery.

Unfortunately, the NL that I have seen have been no help with my problems, either before or after surgery. I hope that you are seeing one that has experience with Chiari. Just don't feel disappointed if you don't get anywhere...it seems to be a regular occurrence.

One last question...have you all the copies of your MRI/CT scans? If not, I would get them ASAP and go over them. You would be amazed with what you are not told sometimes.

Good luck!
Carolyn

[LRW72]

Thanks. I'm going to be making an appointment with the NL this week. I appreciate your help and knowledge!

LRW72

[soccero]

I'm am not sure y u said u can't be on diamox long term? It does depleat patassium and some other blood stuff but u just need to have a blood work up like every two months. I'm on it long term do to ih. If it helps u that's great cause it does nothing for me.
Molly

[selmaS]

HI...well u have been thru the ringer that is for sure...goodness....

Well, it should not be rejection of the patch, since it is ur own tissue, I also had skin harvested from my scalp for my patch...I have had no issues with mine.

I can only wonder if u have a build up of CSF..too much and ur  body is not absorbing it...no real obstruction , just over production....it will cause pressure and many of the symptoms u mentioned.The med Diamox indicates the dr is aware there is too much CSF-

[Diamox, is a carbonic anhydrase inhibitor that is used to treat glaucoma, epileptic seizures, benign intracranial hypertension (pseudotumor cerebri), altitude sickness, cystinuria, and dural ectasia. Acetazolamide is available as a generic drug and is also used as a diuretic.]

The NS is looking to see if there r obstructions, and could be y he is saying it is "all clear"....no CSF blockage, so he did his job...and he is right...now u need a good NL to dx what else u have going on...it may be chiari related and it may not...I cast my vote that it is....

Do u have a good NL or will ur NS talk to u in regards to IIH? intra cranial hypertension also known as pseudotumor cerebri...this is most likely the issue and will be until u r treated for it.This is a side effect of PFD and not all of us get this, but it seems u may have had it b4 surgery and it might have been ur problem all along and y ur dr did not see a blockage......

This is one aspect too many of the drs overlook ...just like sleep apnea...so we all have to educate ourselves as to what to look out for.

Please keep us posted

"selma"

[LRW72]

Thanks everyone. Selma, I had bony decompression in April of 2009 and duraplasty with my own tissue from my head in July of 2010. I can't tell you what "all clear" means other than that was the answer I was given. They can't find any CSF flow problems. The last MRI was Dec. 18 and my symptoms are getting worse with each passing week. The MRI included my thoracic spine, so I'm assuming the other conditions were looked at, but I'm not sure. Each time I go to the NS he looks, well, bewildered that I'm not getting better. The MRI results were given to me over the phone by a tech, so I think he just doesn't know what to do with me at this point and has now passed me on to yet another Neurologist. The first one I went to, prior to my first surgery said I was just hyperventilating and didn't know it. That's why I was so dizzy...Uh, yeah, that's what he said. He said that there can be no symptoms with CM1, only CM2. Well, he was a quack. The second, post surgery #1 said that my severe headaches after surgery had nothing to do with my surgery. (What evidence he was using, I have no idea.) He suggesting Topomax (aka "Stupidmax") which worked on the headaches for awhile. Than I started blacking out (in public), nearly fainting each time I picked something up heavier than a pound or two, and my ears had enormous pressure. After the run-a-round from the NS office, I finally was told to take Diamox again to see if it helped. Well, it did. I felt great, but they have told me, and I have done the research, that Diamox is not safe to take for any extended period of time. I had the surgery two months later. The MRI before that surgery was "clear" of CSF flow problems, too. But, of course, when he did the surgery, he said I had a lot of scar tissue that was pressing on the cerebellum and it didn't show up on the MRI. I had him do the duraplasty, too, so I would have covered all of my bases and not have to go back. Well, 5 months later, here I am again.

Thanks for the support. I'm ready to start researching, again, to see what I can do.

[Givenstrength]

I'm real sorry for the return of such severe symptoms! It's such a long hard road that I guess never ends! I pray you won't have to go through a third surgery and that they can find a way to relieve the symptoms!

Sorry I can't be of much help I haven't had my surgery yet.

[selmaS]

Hi and welcome to the Chiari forum.

I am so sorry u r having these issues, it is not uncommon for this to happen, but it does not happen to everyone.

First, if u do not mind can u tell us a bit more about ur first surgery...what all was involved?...was it a bony decompression since u said the second was a duraplasty?

And what type of patch did u get in the second surgery?

How long since the duraplasty?

It sounds like u may have psuedotumor cerebr or intercranial hypertension and could explain y ur MRI's appear "clear"....clear of what I am not sure...do u mean of herniation, overcrowding or CSF blockage?

May I ask who was ur surgeon, was it a chiari specialist....were u checked for related conditions like a syrinx, tethered cord, ehlers-danlos?

Have u checked ur BP?.....

A good NL that knows chiari may be a good place to go next as they do the dxing...a NS only does the surgery once a dx is in place.....

We r happy to have u join us here, but not happy for hte reasons that bring u.

"selma"