I met the Neuro in Mexico [Archive] - BrainTalk Communities

hydromom

09-13-2007, 04:19 PM

Hi Friends

I went to Mexico last week to meet with the Neuro. He was recommended to me by Dr.D last year before the multiple operations. As I have mentioned before we kept intending to move home to Acapulco but Rafael's shunt kept malfuctioning.

I have always believe Raffi is not fine and his headaches are daily. As an infant he was shunted in the fourth because it was isolated and also in the
first(?? you guy know what I mean). The fourth ventrcile shunt stopped working years ago and they never repaired it. So he has a large fourth ventricle.

When the Neuro in Mexico City looked at his images he without hesitation told me that Raffi needed to be shunted again in his fourth. He explained to me the following....Raffi's gait....Raffi's minimal tonsillar ectopia is due to the pressure from the ventricle and finally I got the answer I have been searching for. His pressures are -1 to 2 upright and as soon as he lies down his pressure soar up to 20. Every night. The doc in Mexico told me the fourth is responsible for that. More a less his brain is being squashed when he lies down. I could go on and on. He suggested that I talk to Dr.D at Sick Kids and I asked him to. He agreed to send him his opinion. He did his residency here in Toronto under Dr.D.

If Dr.D does not agree to do it here (free for us) than the cost is $15,000USD in Mexico.

Dr.D phoned me in Mexico and told me that Raffi never was shunted in his fourth vent. I told him to please review Raffi's records and that he shunted him 4 times there when he was an infant. The shunt still shows on all his images!!!! What's up with that???

Any opinions???
Bitter sweet news, eh??
Thanks
Marilou
PS

I went to Mexico alone so the Neuro never met Raffi. Also the Neuro in Acapulco gave me the same opinion....go figure

monicad1974

09-13-2007, 05:17 PM

Tell us about Mexico's medical system. 15,000 is alot less than what it would cost in the states. The most part insurance would pay for it and you would pay up to a certain amount. You don't really have a chance if you don't have insurance. But some States will provide some help but to get into a doctor without insurance is about impossible. I understand Canada offers health care to all residents but you don't get to choose your doctor for the most part. Does Mexico have insurance and a health care program? All I have ever seen on it is where people go there to get cheap plastic surgery and fat reduction. I hope I did not say that the wrong way. I'm just wonder about other country's medical care.

monicad1974

09-13-2007, 05:18 PM

Good luck with his new doctor...

kathleenandjoe

09-13-2007, 07:01 PM

I would seriously question going with this opinion. This is a neurologist giving you surgical advice for shunting??? Seriously? Neuros are not trained to do that. They can read scans and tell you about brain areas and what they are responsible for and if there are likely seizure foci evidence. . . .but vents and pressures. . . . please leave that to neurosurgeons.

It is also vent four blocked (aqueductal stenosis) in our case. Why have they not tried an ETV? Just becasue of A.S. - this does not mean a shunt in another vent will not do the trick in most cases. YOu have to understand CSF balance to really get this. Now if he also has a chiari (which would mean a blockage or slow passing of fluid down into spinal cord from vent 4) . . . THEN the answer still would not be a shunt in the 4th necessarily. . . but a chiari decompression surgery. Hence my asking about the MRI recently since his bunches of malfunctions.

As for the questioning of the shunt in vent four from Dr. P. . . . not sure what to think of that. What else did he say about this opinion from a doc he referred you to when he called you???

Has an MRI been done recently? Cannot remember.

I found the info. regarding Emily and the aquired chiari very interesting. We are now dealing with our own headaches, increased seizures, and now a vomit episode yesterday. So I now really know your frustration.

CathyE

09-13-2007, 08:07 PM

marilou, just to cllarify, did you mean you saw a Neurosurgeon in Mexico when you said Neuro, or Neurologist? (We usually assume Neurologist for Neuro and use NS for Neurosurgeon.)

now, my questions/response:

Dr.D phoned me in Mexico and told me that Raffi never was shunted in his fourth vent. I told him to please review Raffi's records and that he shunted him 4 times there when he was an infant. The shunt still shows on all his images!!!! What's up with that???

Any opinions???
Bitter sweet news, eh??
Thanks
Marilou
PS
I went to Mexico alone so the Neuro never met Raffi. Also the Neuro in Acapulco gave me the same opinion....go figure

That's weird!
Did Raffi have 2 valves at the same time or did the catheters from the 2 ventricles join before entering the valve? But that would still essentially mean it was shunted !?
So did Dr. D. indicate he disagrees with shunting the 4th vent and is not willing to do it ?
It's confusing when Dr's disagree! Who to believe!?

kathleenandjoe

09-13-2007, 08:19 PM

Never thought of that CathyE. . . . oh much different if you are talking about a NS (not neuro) there in the place where you were wanting to move back to.

That would make his opinion make more sense.

hydromom

09-13-2007, 08:48 PM

Hi

Yes Dr. H is a neurosurgeon. Yes, Raffi had two valves. He does not chiari, he has minimal tonsillar ectopia which measures 3.7mm.

Please keep in mind that this Doctor came recommended by the author of the Shunt book. Also, I have insurance, but did not renew my family policy last year due to the situation. I do not believe Raffi woulkd be covered since the past year he had four revisions. The hospital is more fancy than the Marriott.
I have lived in Mexico for 12 years and unfortunately the wages for the help is low. That may be part opf the reason for the 15,000 cost. I do believe the docs make the money, but I am not paying 40.00 an hour for a nurse or 15.00 for admin etc....
Also, here in Canada we can choose our Doctor. maybe the NS was planning on giving me a break.

I trust this man. He came highly recommended. I would imagine that if he wanted the $$$ he would not have sent a letter today to Dr.D suggesting he has his fourth vent reshunted.

All I know is that he was the first NS that could explain why Raffi has such tough nights. Why his pressures go from 2 to 20 every night. It makes sense. His fourth is the culprit.

Anyway , I believe that my instincts and God will guide me into the correct decision.

Thanks,
Marilou

monicad1974

09-13-2007, 10:55 PM

I don't mean to be difficult. I was trying to understand your moving and missed everything. I have never heard of a doctor talking about shunting the 1st and forth vent. It's real confusing to me. $15,000 still sounds really low. I think the shunt by it's self is like 20 or 25. I may be really wrong. I know I'm really confused. Have you contacted the hydro association?

www.hydroassoc.org

Your doctors may not be on this board but I am sure they must be known by others on this board.

One more thing is it ok that he keeps having this issue if it is pressing I'm affraid it may do more damage besides just making him feel terrible.

hydromom

09-13-2007, 11:26 PM

You are not being difficult, on the contrary. I am relying on you guys to help me and that is what you are doing. In a strange kind of way I listen to you as if it were my son speaking because you too suffer and have suffered.
I am a mom who has to be open minded to hearing all kinds of advice.
Of course, I wish he could tell me that he would rather live as he is , but would that benefit him? I am scared to death of the consequences of making the wrong choice. It would be so much easier if all doctors had the same opinion...that would leave me with no choice.
Thanks for the input and please don't stop.
I wonder if there is anyone out there with 2 shunts??? There has to be and maybe they would give me there thoughts.

Thanks Again
Marilou

LIZARD

09-14-2007, 08:21 AM

I wonder if there is anyone out there with 2 shunts??? There has to be and maybe they would give me there thoughts.

I have known several, and in fact someone posted about this a couple of days ago on one of the other forums I'm involved with. Although it seems to complicate some things (shunt failure rate can be higher, because when one fails, the other can follow), it may be what Raffi needs. It's certainly worth asking about. Maybe E Dr. Rekate and explain the situation? I know he'd have to see Raffi to get a real sense of what he needs, but he may have some thoughts for you. I think this is the right addy: Harold.rekate@chw.edu.

(((((((((((((((((HUGS)))))))))))))))))))),

LIZARD :)

hydromom

09-14-2007, 11:27 AM

Hi

Thanks Liz. I was thinking about him the other day. The two NS in Mexico are pro the 2nd shunt, the one here is against. I think a third would help me alot. The problem with Rafi's fouth vent shunt when he was younger was that it kept popping out. They say it is a tricky surgery.

Dr. D called me today and told me he wants Raffi to see an ENT. He said they are also neck specialists. His app't is on the 3rd of October. I have a feeling he wants the ENT to see if the fourth vent could be responsible for all the neck pain. That consult maybe what Dr.D is going to help base his decision. Make sense to you???? Why else did he call me with this idea?

Since I am now picking money of the tree in the backyard I guess I could pick a bit more a fly Raffi and me to Phoenix. Dr. Rekate's opinion would certainly help.
Do you think I have to go or would a CD and some $$ be O.K?? Wishful thinking, he needs to see Raffi, right?

What am I going to do????Im am more scared every day. When I see a child in a wheelchair I think about the negative impact of my decision. When I hold Raffi in bed at night as he suffers, I think about the positive impact of my decision. I'm sick right now.

Thank
Marilou

CathyE

09-14-2007, 12:25 PM

Marilou,
My heart goes out to you! I almost feel your pain :(
What a terrible situation!

Well, when I was exploring the possibility of Chiari on that online group, a woman from Canada told me she was diagnosed by an ENT in Toronto!

But he is no longer in Canada :( (just for me, in case)

So maybe that IS WHY Dr. Drake is referring you to an ENT!!! We have to think positive here!!!

Of course it doesn't hurt to cantact Dr. Rekate to get the ball rolling, in case you need another opinion.

I'm praying for you & Raffi.
Cathy

Mom2HeathandKynzer

09-14-2007, 05:33 PM

My 5 yr. old has two shunts...one is in his trapped 4th ventricle. He has had it for a little over a yr. Before that he had numerous revisions because the old NS we had didn't have a clue! Our new NS put this shunt in after doing an MRI and CT scans and she said they should have seen it a yr. before they did. THis was a VERY tricky surgery because it is close to his brainstem...but it makes tons of difference in him....before this he couldn't sleep at night and was in ALOT of pain. He has had to have 2 revisions on this shunt so far...the first being a blocked valve and then he had one on Wed. because he broke the tubing by turning flips....so no more flips. If you want to call me and talk I don't mind at all Or post a message on here and I will do my best to answer it....but I will say the NS in Mexico seems to know what he is talking about as it's the same things we heard with our NS and Kynzer has done great since then! Also...not to scare you...but if he has alot of pressure in the 4th ventricle area it can be pretty bad as it is so close to the brainstem which controls breathing and important stuff such as that.
I hope this helps to hear of other kids with 2 shunts...it's not the norm. but it does happen alot.
Anita

mpsgirl

09-14-2007, 05:52 PM

I jsut want to add that my Neurologist has been the one to do all 3 of my inital LP's before I had a shunt placed, he works very closely with the Neurosurgeons though maybe b/c of this disease and the high chances of having Hydro that is not 'classic presentation' Anyways he reccomended a shunt and consulted NS's at his hospital on what type and then he and I got ahold of the NS here in WI I saw/see for revisions. So some I think are more educated on the issue than others.

hydromom

09-14-2007, 10:40 PM

Thanks

I will phone you. I think it would help me alot to compare before and afters with your child.

I am so grateful to have this community to lean on. This is to date the most important choice I've had to make. My husband is great, but it all comes down to me. He is afraid, too. Raffi has good hours. I can not say full days.
I am sorry to hear about the revision on Wednesday, but the fact that he was able to be FLIPPING around like a normal little boy touched my heart.

Thanks Again

hydromom

09-14-2007, 10:43 PM

Erica

How many shunts do you have?? and where??
Thanks for responding
Marilou

mpsgirl

09-14-2007, 11:35 PM

Marilou I apologize I should have elaborated I have shunt currently an LP shunt (lumboperitoneal) which is either not working or more likeally my spinal fluid is just not able to get to that shunt b/c of the severe cervical spinal cord compression I have. Right now I receive monthly Intrathecal injections in my neck right below the brainstem (they shave a bit of hair at the base of hair line/neck for each procedure) I will be getting a VP shunt (programmable) not sure where they will be placing it. - may be having a NS consult in LA next week. But I also must add that my pressures affect my breathing and it is like nothing else like breathing through an ocean of water and as hard as you try you struggle and struggle to get as much air as you need, you get some air but always feel like you need more. Anyways sorry I always chatter endlessly. Thinking of you and Raffi.

mpsgirl

09-14-2007, 11:39 PM

I should add that the Intrathecal treatment I get will hopefully reduce my compression so CSF fluid can get to the LP shunt - the drs are not planning to remove it at the same time they put in the VP shunt - they said they might remove it later but would wait and see how I did. So I will hav 2 shunts atleast for a while.

Lauren88

09-15-2007, 09:36 AM

Ex 2 shuntee here - I'm inexplicable lol. My experience is that 2 shunts does NOT necessarily mean a greater risk of blockage - when mine blocked it tended to be one side or the other, I don't think I ever had them both block at once. Actually, I think it was actually safer for me to have 2 at the time (from the ages of about 2 to 12/13) because I still had one shunt working to clear the CSF if the other blocked, do you know what I mean? Sorry I don't know which ventricles they were/are in (I still have one but it is blocked hence the ETV.) I just wanted to say you CAN have an equally positive outcome with 2 shunts as with 1, I went about 7 or 7 and 1/2 years without any problems :) Also if it is the right thing a 2nd shunt can make a HUGE difference - pre 2nd shunt I had a major squint/crossed left eye, patching etc was fruitless - post shunt/ETV (it returns if my hydro does i.e. if shunt/ETV fails) it is imperceptible except to docs I think.

I hope that makes you feel a bit more positive, but to be honest I think blockages etc are down to luck, or lack thereof. I was told about a 2 year old who had had like 80 shunt surgeries :eek: then you get people like Liz who have functioning shunts for 27+ years :D and people like me, who are in-between (5-7 years max problem-free.)

I presume an ETV would not help Raffi?
hugs and I will be thinking of you as you make this difficult decision - please keep us updated.

Austinsmom

09-16-2007, 01:11 AM

MaryLou,

As you know Austin has 2 working shunts, one programmable.
2 shunts can be trouble, and complications can be many, starting with shunt depended for life, collapse, malfunctions hard to figure and a host of worst things, the risks can double and any good neurosurgeon would try most anything not to have to place a 2nd shunt, you are in a terrible spot. {{Hugs}} I must say I fought the idea of the 2nd shunt, but It did help Austin and has now for over 4 years:) (knock on wood)
My heart goes out to you,
Hugs,
*Trust your gut, but definitely get a 3rd opinion, a tie breaker, as we talked about...
Whoever emails you back first Rekate or Lazareff, send scans if possible with the Emails here are some sites on Dr. Lazareff of UCLA

Hopes for an answer that helps Raffi

Global Neuro Rescue
http://www.neurosurg.medsch.ucla.edu/Programs/Pediatric/Pediatric_Intro.htm

http://www.globalneurorescue.com/aboutus.htm

http://www.neurosurgery.medsch.ucla.edu/Faculty/Lazareff/Faculty_Lazareff.html

http://health.usnews.com/usnews/health/best-hospitals/search.php?spec=ihqneur

CathyE

09-16-2007, 09:50 AM

As the subject says I sent you a potentially important email !!!

A Toronto Dr. that might be able to help IF he hasn't stopped seeing patients between July and today!

Fingers Crossed!
Cathy
PS (for people beside Marilou, as this was in my email to her!)
our adult support group said he had retired from seeing patients, but on a Chiari site, there have been 2 posts about how wonderful he is and the last one was July.

mpsgirl

09-16-2007, 06:25 PM