Update- My husband, Sonny, finally got his referral to see Dr. Damrose at Stanford. This journey is pure torture! Diagnosed with PPPD, then Vestibular Migranes, then Microangiopathy, then heart doctor saying NOT Microangiopathy, then EAGLE SYNDROME by radiologist after neck CT. More testing….
Over time, at least 15 years has increased in wavy/dizzy, heavy head, foggy brain, off balance, Migranes, walking carefully, no throat issues just when turning neck up/down, sideways, getting in and out of vehicles. It is now 24/7 wavy/dizzy from 1-10 now it’s always a 9-10 wavy/dizzy. Going out to anywhere it’s a 12-13 wavy/dizzy.
MANY ENT’s, Otologists, Neurologists, until you get the right one that works WITH you, Dr. Lenaerts at UC Davis is a treasure!
Even VA checked him early on, with testing him, their ENTs and Otologist only to try physical rehab and sent him home with no explanation. Then came UCDavis With everything they have and nothing came up! Dr. Lenaerts just did a spinal tap and what showed up was infection and fluid on small scale. So after all my request’s to see Dr. Damrose we are headed to Redwood City on Thursday. With all his CT and MRIs in hand! I also have a page of all his symptoms in hand! Even though Sonny is 82 with health issues, he said if these issues can GO AWAY he would definitely go the surgery route. He said this is wearing him down! You will get an update after our appointment on Thursday.
This group has been so helpful and supportive. My prayers go out to each of you on these health issues!
@Cherylc - I’m so glad your husband has an appointment w/ Dr. Damrose coming up very soon! We’ve heard he was booking very far ahead i.e. many months so it’s great news your wait wasn’t as long as for some of our members who’ve seen him.
You mentioned Dr. Lenaerts at UCD. Did he diagnose your husband w/ ES & IJV compression or how was he helpful for you? I’m asking because we might want to put him on our Doctors List as a resource for members in Nor Cal area if he diagnoses ES.
Out of curiosity, has Dr. Damrose moved his practice to Redwood City? Last I knew his office was in Palo Alto near Stanford Hospital. I know there is a VA hospital in Redwood City so perhaps he’s doing some work in that area now.
I look forward to reading your update after Sonny sees Dr. Damrose.
I’m glad that the LP was worth doing for your husband to clarify things…and I hope that your appointment with Dr Damrose goes well and that he can help your husband , look forward to hearing how it goes
The office we are meeting Dr. Damrose is at 450 Broadway Street, Redwood City, CA. I’m thinking he had a time slot open at this location because of a cancellation. Happy about that!
As for Dr. Lenaerts, it’s been trial and error with tests and meds. I told him on my chart that the only thing not X-rayed on Sonny was his neck so he put the referral in. That’s how we found out about Eagle Syndrome.
Our meetings are always on time and trying to find answers. I type on my chart and he answers and we go to the next test. I asked for a referral to UCSF and it’s done. I’ve researched and asked questions and Doctor has responded accordingly. I asked for the gold standard CT with contrast for the Eagle Syndrome and he sends the referral. Done! And he has no problem with Sonny having the surgery whereas, Dr. Diaz and (second opinion) Dr. Fuller from UCDavis said “NOT” to have the surgery.
We don’t know if he has IJV issues. That is what we are thinking. Sonny has no throat issues just neck issues. He will make the decision for surgery with Dr. Lenaerts after our appointment with Dr. Damrose.
Dr. Lenaerts also ordered the Spinal tap, which showed mild inflammation and fluid buildup. Next is the eye specialist. Have to wait awhile for that one. But I requested the referral to Dr. Damrose and after the tap unbeknownst to us it’s ordered.
Dr. Lenaerts has said he will not give up on us! And he has been true to his word!
Hope this helps for those in Northern CA. One step at a time. But find a Great Neurologist.
Prayers to all going thru this! It’s overpowering! Cheryl
@Cherylc - Thank you for the good information about Dr. Lenaerts. He sounds very proactive on behalf of his patients. That seems to be more rare these days. I will add him to our Doctors List.
Dr. Damrose will give an opinion as to whether or not Sonny has IJV compression. You’re also welcome to post a few of his CT images on the forum (3D images are the easiest for us to read), & we can give our non-medical, but experienced opinions about what we see. That information can be used in discussion with his doctor(s). It would be great if Sonny does NOT have IJV compression. Dr. Damrose operates on either version of ES i.e. non-vascular & vascular so Sonny is good hands either way.
We have the Dec. 11 date that Kboi had!! Thank you again @kboi, otherwise they were going to schedule us for Feb. 12, 2027. So we are penciled in for the left Styloid on that date. Not sure how long Dr. Damrose waits for 2nd surgery.
So ready for this surgery. Will keep you updated! And Thankful for KBOI!
@Cherylc - Thank you for sharing your husband’s surgery date. It was very kind of @kboi to give his date to you. So great that surgery will be 2 months earlier than expected!
I believe Dr. Damrose does this type of surgery about 3 months apart, however, it may also depend on how your husband’s healing progresses as that can also play into how close together or far apart surgeries are done.
