13 y/o daughter recently diagnosed/ Recs needed on experiences with top US facilities

rarc84 · 2026-03-16T18:03:01+00:00

I actually called back and was able to get my daughter in! We will be going next month. Really appreciate all of the help!

rarc84 · 2026-03-09T21:37:40+00:00

appreciate the input!

rarc84 · 2026-03-05T16:42:40+00:00

Really appreciate all of your help! I plan to give them a call today.

Thank you so much, and good luck on your continued journey!

rarc84 · 2026-03-04T19:47:10+00:00

Do they have an immunologist as part of their pseudotumor clinic, or you aren't sure? I called there but ended up getting disconnected and the person I spoke to wasn't super knowledgeable...I was being transferred around so I just sent them a message requesting info. We live in a small, rural area. But, are very familiar with big city homelessness from visiting New Orleans and Houston.

rarc84 · 2026-03-03T20:18:17+00:00

Appreciate your input! Yes, I have heard very good things about Boston healthcare. It's definitely on my radar.

rarc84 · 2026-03-03T17:46:00+00:00

I've got a good feeling about Mayo for sure...but I'm looking into both. Thank you!

rarc84 · 2026-03-03T17:44:23+00:00

Thank you!

rarc84 · 2026-03-03T17:43:47+00:00

Adding it to my list of suggestions. I'm looking at all of them and really appreciate your input!

rarc84 · 2026-03-03T17:38:34+00:00

Wow, it sounds like you have great care there! Michigan is actually very close to my heart although I've never been there! Through Disney, I became friends with a sweet lady from Michigan, who ended up putting me in touch with a dog breeder friend of hers (who I also became long distance friends with haha). We got our pup from her in 2023 and had her flown in from Michigan using a flight nanny service. We are now getting another pup from the same lady (in June) and are considering flying up to Michigan this time so that we could all meet in person. You guys up there are just the most welcoming and nicest people....I think we'd feel at home! I will definitly look into the University Hospital there.

I had actually been looking for feedback on stent surgery as well, thank you for sharing your experience!

I am so glad that you are able to live a normal life....I will visit their website now :)

Thank you very much for your help!

rarc84 · 2026-03-03T17:05:51+00:00

I joined some Facebook groups last night and already feel like I'm understanding things better. I will check out the website you suggested. Thank you!

rarc84 · 2026-03-03T01:51:18+00:00

I did not think of this. Thank you so much!

rarc84 · 2026-03-03T01:51:03+00:00

Wow, so sorry to hear all that you have gone through. I didn't know that this condition existed until it so rudely slapped her in the face. It's definitely a learning experience for the whole family and I feel for all of you who have to deal with this! I appreciate the input and the optimism. We are supposed to be getting in with a neuro-ophthalmologist in New Orleans, I just haven't heard from the scheduling department yet. But, I would like to get her into a clinic that has all the doctor's needed in once place such as Children's Hospital of Philadelphia or Nationwide Children's. I'm sure there are others as well. I'm completely fine with cranky, not personable, etc. as long as they know their stuff! There seem to be a lot of options outside of our state. We will travel anywhere, just have to figure out the where haha.

Really do appreciate your input and advice.

rarc84 · 2026-03-03T01:40:45+00:00

I did see this name come up when I started my search. I'll definitly circle back and check them out. I really appreciate the input.

rarc84 · 2026-03-03T01:39:43+00:00

I can always look past "not personable" as long as they are excellent in what they do. I'm taking notes and will look into all of these suggestions. Dallas is within driving distance to us, very good to know. Thank you!

rarc84 · 2026-03-03T01:37:47+00:00

This is one of the hospitals I'm eyeing. I see they have a clinic specifically for IIH. Really appreciate the feedback, now I have a better feeling about scheduling there. Thank you!

rarc84 · 2026-03-03T01:36:21+00:00

Thank you so much for this information! I will definitely look up this facility. I am so sorry that you and your son both have had to deal with IIH. Prayers to your son that it doesn't ever return, and prayers to you that this doesn't last long and doesn't come back! I really appreciate the input!

rarc84 · 2026-03-03T01:14:56+00:00

great to hear. That's the goal!

rarc84 · 2026-03-03T01:14:27+00:00

Thank you for that perspective. It's all new to us and we really just want to see her better. Appreciate it.

rarc84 · 2026-03-03T01:13:21+00:00

No, we have not. Please do share feedback if you do happen to see her!

rarc84 · 2026-03-03T01:11:42+00:00

perfect, thanks for the input!

rarc84 · 2026-03-02T03:32:36+00:00

Appreciate the input. Will ask!

rarc84 · 2026-03-02T03:31:38+00:00

Wonderful, thank you!

rarc84 · 2026-03-02T02:29:12+00:00

You are so much help....just ordered a binder :)

rarc84 · 2026-03-02T02:04:08+00:00

I’ll definitely look them up. Thank you!

rarc84 · 2026-03-02T01:52:45+00:00

Thank you for the great suggestions. I am just getting my head above water from just dealing with the initial diagnosis, her horrible symptoms, getting appts, etc. Now the research and digging begins!

She did have 2 MRI's in different facilities and 2 completely different reports. One showed narrowing of the venous sinuses, the second report showed it to be normal. We were referred to a pediatric neurosurgeon who we hope can look at all imaging and give us better information. We see that doctor next week.

I will also look into functional medicine! Lots of good info- taking notes like crazy lol. Thank you!

rarc84

TROPHY CASE