Relative Diagnosed with Chiari Malformation in Philly Area

[Slobra96]

Hello,

This is my first post and I was hoping to get some insight on what we should be doing.  So my relative (age late 50's) was just diagnosed with Chiari Malformation type 1.  She has no symptoms but has been getting MRIs yearly for the past couple years due to another issue.  So the neurologist noticed that the herniation grew from 5mm to 10mm in a year and recommended she go see a neurosurgeon in the area (not actually in Philadelphia).  So this neurosurgeon wants to operate soon since the herniation doubled in size in a year and its blocking the CSF (wants to do the decompression surgery).  He isn't a specialist for chiari per say but says he has done this surgery multiple times in the past (65 career, but about 10 in the past 10 years).  

So I wanted to see if anyone has any opinion on whether we should be getting a second opinion, if there are any doctors in the Philadelphia area we should see, and also if anyone has gotten surgery for this even when they had no symptoms.

Also, I have been reading up on the Chiari Institute in NY and was wondering if anyone had any experience with them.  If so, how many times did you have to meet up with them in NY prior to surgery? How many times did you have to go back up to NY after surgery for checkups?

Thanks!

[selmaS]

  Many have gone out of network to TCI....but things have changed recently...call  their financial office or your INS company to see if it will be covered and how much you will be responsible for.Even out of network some INS companies will pay for it....so look into all possibilities.

For me it was all considered in network, but I still had out of pocket co-pays.....

[Slobra96]

Thank you for the comments!  It looks like we are going to submit everything to TCI and see what they have to say.  I am expecting they are going to want a couple more tests done but it seems like it will be worth it all.

Did anyone have any problems with their health insurance when going here?  Basically just wondering if anyone had to go "out of network" in order to get the surgery done at TCI.  If so, how did that work out?

Thanks!

[selmaS]

  It was a few months from contact till I sent my info and they want MRI's  and forms...so it takes time to compile it all and then send it in and then they have a meeting where ALL the NS's discuss each new case and which ones need immediate care and attention and which ones can wait....

I would say I sent mine in the end of Jan or beginning of Feb of 08....then was seen in March and went for surgery in May.....I needed more testing after my initial visit.....some was done up there and some at home.....

My DD and DH also stayed at Variety House, it is great in that the hospital security will escort family to and from the VH to the hospital....

She is in ALLENTOWN TOO??? !!! WOW...I have not been able to find anyone so close b4....may I ask what part of Atown? North, south, west or east side?......

I did try the neuro group here at LVhospital...and not worth the time, as was my trip to Unv of Penn in Philly....waste of time and a co-pay....very upsetting ....but I did learn things along the way so not a complete waste of time.....

Well a MRI of the complete spine, so a brain MRI a cervical , thoracic and lumbar spine MRI so they can check for disk issues, syrinx's and tethered cord.....then testing to rule out Ehlers-Danlos* as it can affect how one recovers should they have surgery...as well as testing for POTS, ICP, CCI, sleep apnea....these all can have an effect on us and our recovery....

Didn't they do a flexion and extention Xray?

Chiari can affect everything with the body's functions as it affects the spinal cord....not sure why Drs do not think they are related.....

And you said she has HA's so she does have symptoms and I am sure once she learns of what the symptoms are she may discover she has many more....I didn't think I really had all that many....but I found out just what all the symptoms are and what is not "normal" then I realized just how many symptoms I have had all along....

Please let me know via a PM (private message which Dr wants to do surgery, I just wonder if it is someone I went to already)

[Elisaandbucky]

Hello. I had my surgery also at TCI in New York. Like Selma above, I had a very good experience

I went for an initial appointment on 5/16/14. I had the procedure on 7/29. I just went back to my doctor for 6-month post-op visit (2/6/15). The hospital stay was very comfortable and I received good care from very nice nurses, anesthesiologist, therapist, and of course my doctor. Dr. Paolo Bolognese was at TCI, but he now has his own practice. He still operates at the Long Island Jewish University Hospital. If your relative has surgery there, you can ask for a referral for anyone with you to stay across the street from the hospital at The Variety House.

I hope this information is useful and that your relative can get excellent care. Sounds like you are a very caring person. Post back so we can help with any further details.

[Slobra96]

Thank you for the response Selma!

That is good to know about TCI.  I know she wants to stay close to home for this surgery but it may be worth while to travel there since they seem to be one of the best in treating CI.  If you don't mind me asking, how quick was the process with TCI between when you submitted your information to them, to the initial appointment, and then to surgery?

She has been getting MRIs for high blood pressure.  About 3-4 years ago she was admitted to the hospital because they thought she had meningitis, but they found it was just from high blood pressure.  She has had migraines for almost her whole life, but the doctors say the CI isn't causing this.  

The neurosurgeon she is seeing right now wants to do the surgery very soon because he thinks she will be getting symptoms soon.  

I do not think she had the CINE MRI but I will check with her to see if she did.  What other kinds of testing do they do?  From what I was told it seems like she just had the one MRI done, which they compared to her last one and saw the growth in herniation, although I could be missing some things.

I am living right outside of Philly right now while she lives in Allentown, PA so I haven't been the one going with her to the appointments.  

Also I see you are also from Allentown, did you happen to look for doctors there when you were first diagnosed with CI.  

Thanks!

[selmaS]

  Hi and welcome to the Chiari forum.

I am not far from Philly and tried to find a Dr there...I went to TCI in NY and was well pleased.....I went up for my initial appointment and then went back for surgery...so I was up there 2 times.....and then a 3rd and 4th for post op visits....If I had to do it all over again I would....

May I ask what other issues is your relative having? There are related conditions to Chiari that many of us have and since it is congenital, many have symptoms and are not aware of it as we consider how we feel to be normal and do not see it as a symptom....so even tho you stated she has no symptoms she may.

Also for a herniation to grow in size like that she would have symptoms .....so it is possible the next set of MRI's were not done the same as the first and may appear there was a growth when in fact there were none.....

Has she had a CINE MRI? Any testing for related conditions?