When do you know if a shunt is needed?

[KerriC1]

I'm at a loss here. The Diamox helps a little but not quite enough. The dose has been upped a few times and I still have problems. Not to mention the side affects. I'm down to 105 pounds because food tastes terrible.

Vision isn't getting any better either. I don't want a shunt but don't know when the final decision should be made, if that makes sense

[KerriC1]

Hi Selma. I u fortunately went by an older list and he was on that one but didn't realize he had been removed for these reasons.

I had my neurologist appt and he said I probably had papilledema but the diamox helped relieve it at the time of my eye exam. I don't go back to see him for 3 months and he said he may taper me down from the meds bc I'm having problems with eating and losing weight and stuff. He said he will see how I feel and go from there.

I'm gonna be looking for another NS to help with this since it seems to be more of a possible surgical thing

And I have a call into a geneticist and am awaiting an appt to get the eds typed. Maybe like you said, if it's the patch this can help to get the ball rolling on removing it.....

[selmaS]

  Hi and welcome to the Chiari forum

Finding the right Dr is key ! One that will rule out ALL related and non related conditions b4 talking surgery as some of these related conditions can affect the outcome of surgery so it is very important to know what all is going on,

We do have lists of Drs, the lists are not a referral nor an endorsement for those listed, it is meant to be used as  a tool to research the Dr to find the right one for you. Keep in mind you may have to travel.

GEORGIA

Dr. Princewill Ehirim
Lawrenceville,GA

Dr.  Vidyadhar Chitale
Marietta, GA

[selmaS]

  If replacing the patch could alleviate not only symptoms or vision issues it may be worth it to go thru it all over again....

Please PM me if your Dr is on our list as I would not want to keep them on it if they ignored you and EDS.

[Parone85mimi]

I was diagnosed with CM in 2009 recently my symptoms has gotten worse. I have all the symptoms including nerve or facial spasms after I sneeze. I am looking for relief. I'm desperate because my life is not normal and it taking a toll on me. No doctor really has helped me. I saw a neurosurgeon 6mos ago and his first go to was surgery. Without really telling me anything else. I don't even know what type I have. I've been to the hospital 8 times in 4 mos. I'm in Ga looking for help. I want surgery but I'm scared.

[KerriC1]

Thank you both for your advise.

Lasel, yes I was diagnosed with CCI and did have a tremendous relief of symptoms when he lifted my head off my spine. I wished he could've held on like that forever honestly! And he did tell me fusion is an option but for now I'm just in and out of a cervical collar. How are you doing?

Selma, I really don't want a shunt or any other surgery if I can avoid it so I'm all about finding other options or answers. I'm just confused as to which is causing which at this point. My NS knew bout EDS and still went ahead with the bovine. Needless to say when I started having issues 4 weeks post op he wouldn't acknowledge them and I washed my hands of him. Now this.....

So the patch huh? Strangely interesting but man I don't wanna go through that surgery again. It was rough. The vision is what is alarming me mostly because Im afraid of going blind and it not being reversible.

[lasel22]

Hi Kerri, I'm doing ok, thank you for asking.  I think the weather in the northeast has been causing my symptoms to act up.  I'm symptomatic but still better than before surgery although I've been having some nausea after certain activities, like just shopping, and I notice trouble swallowing (like food gets stuck in my esophagus and i need to keep swallowing) at those times too which is concerning.  I have my yearly mri and appointment in april/may so I'll see if anything has changed.

If you are looking for a second opinion regarding if a patch or cci is the problem you are dealing with the NS I see does review discs and medical info if you mail them in.  He will then contact you if he thinks he can help. Let me know if you'd like his info, you can always private message me too.  I've been in touch with some people who have had a fusion done with him and are happy with the results. I'm sure there are always negative stories too, it's always such a hard decision to make.

[selmaS]

  As lasel22 mentioned above if it is the patch it can be replaced.....and having the wrong surgery will only lead to more.....

CCI is a possible issue if lifting your head felt better,,,,,and it is a related condition to EDS....but a fusion again is something that limits ROM so it is very important to get it right,

Just know you are not stuck with the bovine patch....find a Dr that can offer help.

[lasel22]

Hi Kerri,
What about a second opinion with a chiari specialist who is very knowledgeable about EDS, chiari and CCI.  Could the increase in pressure be due to CCI???

I remember my doctor discussed patches during one of our appointments and said the wrong patch can cause many problems and that many of his surgeries involve replacing a bad patch.  I didn't need a patch with the type of surgery he performs now but we were just asking him questions.

I remember in a previous post that you said when a doctor lifted your head up you felt much better.  Doesn't that usually indicate a fusion could help.  Not that that is a great option either, but I'd rather get the right surgery than a wrong one.

I hope you find an answer soon.  

[KerriC1]

I do have eds and also have a bovine patch..... I know that's an issue and now I'm kinda stuck with it

The only dr I have right now is a very good neurologist but that's it.

I've failed 3 vision field tests consecutively but since being on diamox I don't have papilledema. I just know I have problems and don't know what the right answer is anymore

[selmaS]

  Hi...I am not sure what the criteria is......but if it were me, want I would want to know is, are there any other possible things to try before going to a shunt....

To explain, if I know I have EDS and my dura patch was not my skin, could changing it help?....

But too much CSF pressure is not good and you do not want to wait until you loose your vision or something else....

Do you have a good Dr to help you with this?