Future visit with Dr. Heffez

[4inline]

I am relatively new to this CM1, neurology and all that stuff.  I did find out about five years ago that I have CM1 but was told I would just have headaches because mine was mild.  Long story short, I am now having a whole host of symptoms that began in Jan. and my tests are all normal...not losing muscle strength, etc.  One MRI showed a lesion, the next one a lesion wasn't mentioned.  I have been 'living by the pill' for about four months now with no answers.  I like my neurologist, but it seems that as long as my symptoms are fairly controlled by medication she's ok with that.  Well, I am not.  To be fair, I've only been seeing her about three months and have only had the regular tests.  I have another appt. next week to see what to do next.  I had to call and request that.  Anyway, I took matters into my own hands and sent my info to Dr. Heffez and they think it may be beneficial to see him for testing.  I am planning on going, I just have to get my homelife and work schedules set up.  Question is, have many people here seen him?  I saw his name a couple of times on here, but I actually found him on the internet through the Wisconsin Chiari Center.  I haven't found anything bad about him on the internet.  It will be a long trip for me and, before I make it, I was just curious what experiences others have had with him.  Thanks.

[northernstarmn]

Hi, there is a meseum not to far from the hospital and the beach, the harley museum is relatively close, and the domes.....another place to eat is Katies Diner the food is good bit spendy for diner food tho,  the first visit we took our youngest son and he had a blast...the next time (surgery) it was just my husband and i, and when i went for my post op (which should have been at 6 wks) 5 mths later (I had unforseen complications to the decompression) we went ourselves again stayed 1 night over and left the next

but your boys will the the pizza place loud music friendly ppl and good food---what more could ya ask for!! :) (Oh but dont get their hot wings while they are big but they have a mush taste to them (unless thats how you like them) if you like them on the crispy side dont get them you will be disappointed! (we told the girl first time here and she gave us a meal deal or something........if you plan to go there take some alumin foil so you can wrap the left overs up, they give you a box but its just not quite enough...LOL...

good luck!
dont forget when you call to make your hotel reservatipons ask about a st.marys discount....some do and others do not offer discounts..
Lisa

[*Stormy*]

Hello

I'm sorry to hear that you are dealing with the news of having two possible conditions at once. A lot of the symptoms for both are so similiar...

I never had "seizures" myself, though I had these really bad episodes of feeling like my brain was shaking so badly that I thought my head would explode. But, I have heard of others that have had seizures related to Chiari so that definitely could be causing it. So many things can happen when the pressure around your brain is so high.

I hope you get some results soon and I pray that you don't have to deal with both conditions.
Take care
Carolyn

[selmaS]

Molly...I copy what u just said.....

I pray Dr H is able to help u too.

Keep us posted

Good Luck sweety

"chiari mom"
"selma"

[soccero]

my mom wrote dr heffez an email today and will be sending him my pictures shortly.  I really hope he can do something for me because I feel like he is my last hope and everything I've tried has failed. I'm hoping they get back tto us soon!
Molly

[kricklekrin]

I saw Dr. Heffez in December of 09 after sending an MRI, reading a 3mm Chiari.  Mild, but with symptoms.  I first saw a Neurologist/Neurosurgeon that examined me and then Dr. Heffez.  He gave me the same exam (very thorough) and showed me the MRI I had done there on his own laptop.  I was surprised at the amount of time he spent with me.  He didn't push surgery.  He had me wear a neck collar for 4 weeks to see if some of my symptoms have to do with cervical myelopathy.  I will most likely see him again in the near future because I'm very dizzy (almost daily), having a lot of headaches and my feet are tingling on a daily basis.  I've been told recently I possibley have MS.  I do have lesions on my brain, but have never been told if they resemble MS lesions specifically.  I can't imagine having both of these conditions.  My experience was a positive and informative one at the Wisconsin Chiari Center.  I don't think you will regret going.  Chiari symptoms can be very frustrating and scary.  If anything you will leave there with more knowledge.  Can anyone tell me if they ever experience seizure like episodes with their Chiari?  I'm possible having temporal lobe seizures, but can't capture them on EEG.  Temporal Lobe abnormalities, but no true seizure.  These episodes are very frightening!  I hope you get the answers your looking for.  Good luck.  Kristel

[4inline]

Thanks so much for all the info on what to expect the first visit.  I'm glad that your surgery went well and has helped so much.  I'll be glad to see him and find out a little more about whether Chiari is causing my problems.  

P.S. thanks for recommending the pizza place because we're planning to take our 15 and 13 year olds for a mini vacation.  They would love it!

[4inline]

Thanks for responding and I hope your surgery went well!  I read on here somewhere that it did.  Will be thinking of you.

[4inline]

Thanks for all the info.  I may contact you again for more info on things to do in town as my husband and I are thinking of bringing our boys (ages 15 and 13) with us as none of us have been to Milwaukee before.  We thought we might make a type of vacation out of it.  Plus, I'm sure there are lots of interesting things to do near the hospital for them while I'm having tests.  At this point we have some freebies at a hotel (due to my husband's work/travel) so we have accommodations.  If I have to come back, however, we will def need the McDonald house or Kathy's Place or something.  I hope your surgery goes well and I will remember you in thoughts and prayers.  Thanks again.

[sheila53213]

there is a Ronald McDonald House as well...It is located by the Childrens Hospital of Wisconsin in Wauwatoas. Its a short drive from Columbia St. Mary's Hospital where Dr. Heffez does surgery. If you want more info, I can get it for you. Just let me know. As I live in Wauwatosa and five minutes away from the McDonald house and about 15-20 minutes away from Dr. Heffez office at St. Mary's.

He'll be doing my surgery on June 28th. I can't wait.

Hugs and Blessings to you

Sheila in Wi
10 mm

[shanmomof3]

You've already gotten great advice but I thought I would just chime in. Dr. Heffez and his staff are GREAT!!! His assistant Renee is just Awesome, she goes above and beyond to help you and get any info you need! Dr. Heffez is very kind and listens to you, and explains things very well. Even the hospital staff has been great and very nice. I will be going in at 5 in the morning tomorrow for my surgery, and so far I have been extremely pleased with everything! Good luck and Blessings ~ Shannon

[soccero]

LOL OMG the world cup is soooooo sooon!
Molly

[selmaS]

Variety House in NY is the same...u get the referral from TCI's scheduling people....it is the only way u get in....

[northernstarmn]

THEY NEED TO CALL KATHYS PLACE BEFORE YOU MAKE ARRANGEMENTS--THEY NEED TO REFER YOU TO THEM --YOU CAN NOT MAKE ARRANGEMENTS WITHOUT THE REFERRAL--

Families and patients at The Wisconsin Chiari Center may also stay at Milwaukee’s Kathy’s House. The mission of Kathy’s House is to be a “Home Away From Home” when families are in need of care in the Milwaukee Area.  Kathy’s House is dedicated to providing patients and their caregivers with a warm and welcome environment during their stay in Milwaukee. Patients and guests are welcomed through a referral system. Please visit the Kathy’s House website for more information. The Wisconsin Chiari Center is happy to provide referrals.

Kathy’s House www.kathys-house.org

[rod44]

Hummmmmm I hope you are keeping the 12th of June free LMAO. I think the games against England will be the hardest game in your group.

Ray

[selmaS]

http://www.kathys-house.org/

I found this link...I am not sure if u need to have confirmation from Dr H that u r indeed seeing him to get to stay there.

[selmaS]

Molly..there is a house called Kathy's Place I believe...similar to a Ronald McDonald house...at TCI the one there is Variety House and it was a former RMhouse.......

Lizzy will have more info on it.

[soccero]

does anyone no if there is a ronald mcdonald house by the hospital?
Molly

[sheila53213]

I just saw Dr. H yesterday for the 2nd time....I am going to go ahead and have the surgery done. Just waiting on them to call back and let me know the date. I would highly recommend him. He is very very knowledgeable on Chiari. His staff is the best too! I've dealt with Renee on many occassions and nothing but amazing things to say about them. The staff at the hospital is also wonderful. I live in the Milwaukee area so I can give you some insight into that. There are plenty of places to eat and stay. Lots to do around the hospital as well.

[northernstarmn]

Dr.H is an awesome doc, his staff is also very good and pleasent to deal with. It takes roughly a week for them to get back to you after you send in the films, once you set your apt up it will be a 2 day apt, one day testing the next you will see him- he will explain things in detail to you, and will also take any questions and concerns you may have.( so your first visit could be short or could be extremly lengthy). They respond to emails fairly quickly, and Telephone calls he tends to make himself- i suffered from complications and he spoke to my husband on several occasions.

I had my decompression Oct 09, and id say 95% of chiari symptoms have gone- I do have some issues but i think they are more related to my complications and or my cervical stenosis.

Selma is right there do have a place you can stay at a reduced fee (donation) i think , not entirely sure we didnt stay there neither time. But They have to refer you to stay there (which Renee will gladly do if you need)- also if you call several hotels in the area will give you a reduced rate but you have to mention you will be going to st.marys. (make sure you get the reduced price if they offer one) also many of the hotels within the city now charge for parking 10$ a day/night-so something to think about.* If you search the site they have a page on accomadation there are several hotels and restrauants there...........and that is where you will find the information about the home thing.

if you have to get some food to eat go to Shuttle Pizza (or pizza shuttle) their sicilian pizza ia awesome! place is a bit loud but the pizzza was good :)

[4inline]

It was only like between a week and 10 days before they emailed me back.  They emailed with the various tests that he would like to do and phone #s, etc.  I then emailed back with a question and received an answer the same day.  I wasn't surprised that he wanted to see me.  I would assume that he would like to examine anyone who has Chiari no matter how mild.  Anyway, good luck.  Let me know what they decide.

[JesVS]

I am actually sending my information to Dr. Heffez today.  I hope that you are able to work out the logistics and can make the trip.  If he decides that I am a candidate for tests, I will do whatever I can to get to Wisconsin.  

Can you give me an idea of the timeframe it took for Dr. H to respond to your mailed info?  

[selmaS]

HI...there r several that had him do their surgery and several waiting on theirs...

To help with expenses bcuz u r traveling they do have a location for u to stay....and u can get flown there using Angel flights.....we have the info on the flights in the links page in the Health Pages.

Shannon is scheduled for the 24th of this month....I am sure she will be able to give u more info on Dr H and his staff.


Good for u being ur own advocate..many of us have found we do have to take matters into our own hands.....

I am sure those that have first hand experiences with Dr H will post a comment.....

"selma"