Really mad..nurse says follow-up not necessary

General
1

Hi,

Ok so today was my 7 week follow up. The weather was bad and we were worried about the drive into Boston. It's often backed up, accidents, construction, etc. It was icy, cold, windy so I cancelled the appt.

The nurse called back and leaves a message and I am so mad and upset and wondering if anyone thinks I"m justified. Everyone else says they have a 7-8 week follow up to see how they are doing, any questions etc.

She says something like, I got your message and cancelled your appt with Dr. Du. You don't have to worry about coming in this winter, it's always going to be bad weather. You can come in the spring, or not all all actually. There's no reason to come in, it's just for your confidence.

I can't believe it. My husband and I are so angry and confused. For my confidence level????? Isn't she concerned about my neurological status, how am I doing, how my energy level is, what do I do everyday, very important is how is my eyesight???????? I've called about my concern recently since it seems to have gotten worse, and the nurse then told me, Jeannine it's just that you're still healing, it takes time, just keep getting up and eating right and you'll be fine. Doesn't she care about if I still have double vision, blurry, do I still need a walker when I go out???? Should I see an opthamologist (that's probably not how you spell that), which is another thing, all of a sudden I can't spell some words right, I can't figure them out and I used to be able to spell everything right. Short term memory Jeannine, how is that??? When can I start to exercise again???? How much, how fast or is it just supposed to be that I don't ask any of these questions or think that she even cares????

It makes me feel like I'm just being overly sensitive and expecting too much rather than having a doctor who cares about me. She was great at operating but is it her or the nurse that is saying this?

I could go on an on I am so angry,

Am I overreacting?????????? Help????????

Jeannine

2

Only 7 weeks out, what do you want them to do? It sometimes takes months for all the swelling to go down. Surgeons do surgery

3

Hi Jeannine, you’re on a long road to recovery and it’s baby steps all the way. My double vision lasted for three months, it heals as it wants to, you’ll be the same. This support group will be your biggest asset from here in cause the people here understand exactly what you’re going through. The surgeon and staff got you through the emergency, they’re not trained for anything further, but if there’s something wrong you need to contact them straight away. Things that you feel now are unique to you, but some of us may have had the same, it’s great to post and get the answers, it lets you know that what you’re going through is part of the process of healing. I would still make your follow up appointment, you’ll feel better once you’ve seen your doc. Start your physio with someone with knowledge of brain injury or strokes and remember baby steps, be kind to yourself and walk the fine line between determination and desperation, good luck and all the best xxxx

4

What great advice!!!!!!

5

I would have to respectfully disagree- if someone is opening up my brain, they should be available for a follow-up visit to answer my questions and check things out. They need to inform you about any restrictions, and ensure that their job (the surgery) is done. A good doctor would be available to offer the best care to his patient, and that includes properly informing them pre-surgery and properly following up post-surgery.

Hang in there, Jeanine, and demand to have your follow up. I thought it was pretty standard to have a post-op visit at around 6 weeks?

6

The difficulty is a surgeon is as Kayt pointed out not trained in those areas. Unless it is directly involved with the surgery :(mechanics) he is no better at the neurological areas than strangers on the internet. There are a list of complications that he discusses brfore and after the surgery that would indicate a problem with his procedure. He knows nothing about what is involved in recovery or neurological issues. He can refer. Now this nurse was prolly overly honest, but she was honest. The difficulty of winter trip when there are no SURGICAL issues far outweighs the advantages. The questions Jeannine asks are best answered by others. the surgeon manages the surgical procedure, in an ideal world the PCP manages everything else. The only thing a surgeon knows about walkers is to swear when he trips over one. The option for follow up for peace of mind was given. What is called intellectual time by surgeons is for the most part no longer billable. You will see even less as time goes on. It is and always has been peace of mind. They are more frequently refering back to someone who can actually do something. The harsh reality is unless he can operate all he can do is pass it off. I wouldn't worry what everyone else does. They aren't you. Even if it sounds the same, it likley isn't. Recovery is an individual thing. Its highly unlikley anyone has had what you had, the way you had it.

7

I dont think the nurse was being unreasonable. You had an appt and didnt want to make the trek because of the weather so it makes sense to postpone it until better weather can be relied on. No one (especially doctors) like no shows because it messes with their schedule and the follow up is more of a formality than anything so she is just being practical IMO. I would be looking to your primary doc for help with any issues you are having. My primary doc has helped me with many issues after my hospital stay from rupture. Medications, referrals to physio etc, some things I just tried to work around myself and judged when I felt ready to let go of things like walking aids. This isnt something a neurosurgeon does, they focus on surgery. About the only thing I got post hospital from the neurosurgeon was a list of symptoms to look out for in case my hydrochephalus gets worse which might indicate I need a brain shunt. He isnt the guy who is going to organise meds or physio or sleeping pills etc for me, it's not his area. good luck

8

Jeannine, slow down, take a deep breath. I’m putting my cards on Kayt, et al. Weather is bad, don’t be a statistic. My Neurosurgeon does follow ups, but my brain and its veins are really strange, according to her. And who am I to argue, I just always thought I was strange! Now I know it’s my brain. Go figure…

I had to wait six months for my opthamologist to check my eyes after the rupture. The brain has to have time to heal. He is part of a whole team of specialists and actually shared my rupture Hx with his partners. I have lost some of my vision. But as every dr who has been in my life since 11.7.13 has said, I’m lucky to be alive! I’m good with that, now I’m like a horse with blinders on. Lol.

Just about everything I have done is outside my Surgeon’s specialty. Besides the eye dr, there’s the PCP, who got me hooked up with a neurologist. Two in fact because I didn’t like the office of the first one. But this was months after my rupture. My surgeon is in another county, she would have no idea of the available specialists here. That’s for me and my PCP to figure out.

I have trouble with words and they used to be my forte. But I’m getting better. I usually can give a definition or starts and ends with letter. Weird huh? But it helps to know people are listening. They can’t help guess if they aren’t listening. Words come better when I type then when I speak. I use the new word for the day game my mom started all her children on. My aunt bragged for years I knew what an encyclopedia was at age two. Also, I don’t need to use the big words I learned that are multisyllable. Keeping it simple, it’s much easier and less of a headache.

I could do no exercise for the first few months after being released. I finally started walking when we got our new dog last January. We walked the driveway multiple times a day. Now I can walk a mile a day. Who cares if it takes 20 minutes. I’m walking and she’s healing. Life is good.

Take it slow, don’t expect to be where someone else is at. get the follow up in the Spring when it’s safer for you to travel. If you have complications, then call them.

This is the piece of advise my Neurosurgeon gave me when I came in with a long list of questions for my six month. “I don’t know you had brain surgery and I don’t know, you just had a ruptured brain aneurysm.” And my favorite “I don’t know see answers one and two.” She did say I can use the same answers for two years! These answers mean she really doesn’t know. There is no playbook or rules here, everyone is really different.

Just practice patience, each and every moment. Perhaps that’s one of the lessons having an aneurysm gives us - everything in its time.

9

Oh, you are definitely not overacting at all and would continue to be your own advocate and make an appointment as soon as you want and need to for your own emotional healing to continue. Having Peace of Mind is a huge step in this healing process and it's the Nurses and Doctors who are able to provide this to us. Please know that I am not I support of how this Nurse communicated this to you but we just never know what someone else might be going thru and maybe she was just having a bad day and, unfortunately, this was seen in her communication back to you. Please do call to schedule your follow-up appt for your own Peace of Mind! ...Michele

10

You are not overreacting. You need to be assessed and followed up on surgery/ device implanted. Boston should have a local support group that can assist with future questions also. You are beginning recovery that goes beyond surgery. Support can include physical, speech and occupational therapy as indicated. This is obtained through a MDs orders. A neurologist should follow you from now on, but a follow up 7-8 weeks post op is expected. Hope this helps.

11

I don’t think you’re overreacting Jeannine. You have EVERY right to see your neurosurgeon for your follow up appt. It’s piece of mind and I can expect some delay due to weather, but they are there to guide you through this especially when you are experiencing some anomalies. Get on that nurse and get some action!

12

You MUST have follow up care !!!!call them issue a complaint on the nurse , if they say not needed, FIND A NEW DOCTOR !!! I have a horror story ( im sure we all do on bad doctors ) I had clippings 3 1/2 years on 3 aneurysms , my surgeon was GREAT , but about 8 months after surgery my insurance changed , had too go too new hospital ,and all new doctors , my new nero surgeon did the angoi (sp ) at about 1 year , said everything looked great .. and that I would not need anymore follow up care from him , which I was kind of surprised by , but continued on ... started having some more problems about a year ago , saw a bunch of different doctors , whom all acted like "whats the matter with you " ended up in the ER 3 days ago feeling REALLY bad , but also tired of no one checking too see what is wrong , the resident nero surgeon who was called too see me at 3am , said the vein between the 2 clippings has expanded , and I need too be seen by nero RIGHT AWAY , he asked when my last surgeon visit was .. he then told me , that doctor was stupid , and that I need too be seen EVERY 6 months for the rest of my life , if the doctor says no ? FIND A NEW ONE !! I learned a really powerful lesson , that we tend to forget because we struggle , IF THE DOCTOR DOESNT SEEM TOO CARE ??? FIND A NEW ONE .. we don't need THEM too help kill us !!!! I hope this helped , we don't let idiots take control like I did !!! WE pay THEM !!! its hard for us to remember that sometimes !!!

13

I also agree with those that are telling you that you are not overacting!! My nuerosurgeon is Dr Ogilvy I believe he is the founder BAF. I had my followup with him after surgery. They never would of told me that the followup was not needed!!! Dr Ogilvy and his total staff are more that willing to discuss any of the issues I or others may have. My PCP is useless and gave me a shot of Turadol and sent me home when I ruptured I don't trust them to diagnos (sp) the common cold!!

14

No, I do not think you are overreacting, we all need that reassurance after brain surgery. My neurosurgeon saw me 6 weeks after surgery & I go every 6 months for follow-up. My annie ruptured on the operating table and I now have right frontal lobe damage. I also have 4 smaller ones that we have to keep a check on. I live 2 hours from the hospital where I had my surgery but we make sure we make these follow-up appts. This is when I have my MRI's, etc... done. I do have a neurologist in my hometown that I see every 3-6 months and he answers questions that I may have. This helps me more than anything, I trust him and his knowledge of aneurysms. Get a good neurologist, he will run tests when necessary and answer questions that the surgeon may not even be able to answer, we have discovered this. It is a long road ahead, it has been a little over 3 years for me and I still struggle with different problems. I would confront your surgeon on your return visit with the information the nurse gave you, sometimes they are unaware what goes on outside of the operating room!

Best of luck!

15

Hi Jeannine, maybe you can write down a list of all your questions. Listing things like 'should I see you or can you refer me to someone to check my eyesight', 'would I benefit from physical therapy', etc.. Then call the nurse back and ask if you can schedule an appointment with the Doctor either in person or by phone to go over the questions. My Neurosurgeon was awesome. I'd walk in with a list of typed questions and hand it to him. He knew I couldn't write yet so he'd write down the answers as he flew through them. He referred me to other specialists when I couldn't eat, hear, see, walk and we went from there. It does take time. I didn't get cleared to drive until 4-5 months after surgery. But you and your husband are your own advocates. Insist on more information. They may not realize you have all these questions.

16

Dear tj1,

I haven't been here for a week so I'm just reading your post. Thank you for your response only I disagree that my neurosurgeon only is seeing me for peace of mind. She is following up for several reasons. She checked my incision (the obvious physical part), my neurological status, she asked me questions about what my recovery has been like, especially my eyesight which has been a problem, and answered my questions. She referred me also to a neuro-opthalmologist and wants to see me again in 6 weeks. Maybe she's an exception but I'm comfortable following up with her and not my pcp or even my neurologist who has not been treating me for any of this. As far as her nurse, my husband and I decided to write down what's been happening when I call her office because she may not even know. She was happy that we told her and even inferred that she will talk to her again. We did this for us but also for future patients. The nurse is a reflection of the doctor. Also, fyi, it's been a week and the nurse was supposed to schedule the neuro-opthalmalogist appointment and still has not called me. I was expecting this and Dr. Du told me that if there was anything at all I wanted to talk to her about to call her pager or email her. I'm going to email her how her nurse still hasn't called me again so she knows the service this nurse is providing.

I hope this doesn't sound rude at all, I guess it's a bit of a sensitive subject with me and I tend to be very sensitive anyway. I just wanted you to know.

Thanks,

Jeannine

tj1 said:

The difficulty is a surgeon is as Kayt pointed out not trained in those areas. Unless it is directly involved with the surgery :(mechanics) he is no better at the neurological areas than strangers on the internet. There are a list of complications that he discusses brfore and after the surgery that would indicate a problem with his procedure. He knows nothing about what is involved in recovery or neurological issues. He can refer. Now this nurse was prolly overly honest, but she was honest. The difficulty of winter trip when there are no SURGICAL issues far outweighs the advantages. The questions Jeannine asks are best answered by others. the surgeon manages the surgical procedure, in an ideal world the PCP manages everything else. The only thing a surgeon knows about walkers is to swear when he trips over one. The option for follow up for peace of mind was given. What is called intellectual time by surgeons is for the most part no longer billable. You will see even less as time goes on. It is and always has been peace of mind. They are more frequently refering back to someone who can actually do something. The harsh reality is unless he can operate all he can do is pass it off. I wouldn't worry what everyone else does. They aren't you. Even if it sounds the same, it likley isn't. Recovery is an individual thing. Its highly unlikley anyone has had what you had, the way you had it.

17

Hi Debbie,

Thanks, I totally agree. I went last Monday and the appointment went great and I have another follow-up as she requested. She is also continuing to monitor the status of my eyes. I see you had Dr. Ogilvy. I saw him for a second opinion and actually met with him twice. I finally decided on Dr. Du but I do have to say that Dr. Ogilvy was great too. He discussed absolutely everything with both myself and my husband. He even asked about emotional issues, how we were dealing with this, it was really amazing and I'm sure he would have been as thorough after the surgery until I was comfortable being discharged. Good choice for you.

Thanks,

Jeannine

Debbie M said:

I also agree with those that are telling you that you are not overacting!! My nuerosurgeon is Dr Ogilvy I believe he is the founder BAF. I had my followup with him after surgery. They never would of told me that the followup was not needed!!! Dr Ogilvy and his total staff are more that willing to discuss any of the issues I or others may have. My PCP is useless and gave me a shot of Turadol and sent me home when I ruptured I don't trust them to diagnos (sp) the common cold!!

18

As I said he can refer which he did. The neurological issues are out of his purvey. Good luck with the the referral he has made, and I am glad he is following up. Its a shame your neurologist and PCP are not, they should be.

19

Hi harlylena,

Reading your post makes me understand how difficult of a recovery you had. I mean you had so many issues to deal with. If I thought I had it hard, and still a bit, I should rethink it since it's nothing as bad as you. I'm so glad you got the help you needed. I saw my surgeon last Monday and she was great and is still going to follow-up with me in 6 weeks and also wants to follow-up after I see the neuro-opthalmologist she referred me to. We're so glad we picked her to be my surgeon. Oh, and by the way, we wrote some things down about her nurse and she inferred that she would talk to her "again" and thanked us for letting her know. Since then, her nurse still has not called me with that eye appointment she was supposed to set up. I'm going to let my surgeon know that in a few days if she doesn't call by then. She gave me her private pager number and email to stay in touch with her.

Take care,

Jeannine

harlylena said:

Hi Jeannine, maybe you can write down a list of all your questions. Listing things like 'should I see you or can you refer me to someone to check my eyesight', 'would I benefit from physical therapy', etc.. Then call the nurse back and ask if you can schedule an appointment with the Doctor either in person or by phone to go over the questions. My Neurosurgeon was awesome. I'd walk in with a list of typed questions and hand it to him. He knew I couldn't write yet so he'd write down the answers as he flew through them. He referred me to other specialists when I couldn't eat, hear, see, walk and we went from there. It does take time. I didn't get cleared to drive until 4-5 months after surgery. But you and your husband are your own advocates. Insist on more information. They may not realize you have all these questions.

20

Hi Pat,

Thanks for your response. I can't believe all you've been through. I think I have a good neurologist, I only met with her briefly twice last year and, of course, she's the one that ordered the MRI that caught my aneurysms. She and her office were amazing in helping me do whatever I needed to get help so I'm confidant that she'll be great for my continued care. In case you haven't read my other responses, my husband and I decided to write down some of the problems we had with her nurse and she was happy we told her and even said she'd talk to her "again." She also gave me her private pager number and email if I had any other questions/issues.

Thanks and take care,

Jeannine

Pat said:

No, I do not think you are overreacting, we all need that reassurance after brain surgery. My neurosurgeon saw me 6 weeks after surgery & I go every 6 months for follow-up. My annie ruptured on the operating table and I now have right frontal lobe damage. I also have 4 smaller ones that we have to keep a check on. I live 2 hours from the hospital where I had my surgery but we make sure we make these follow-up appts. This is when I have my MRI's, etc... done. I do have a neurologist in my hometown that I see every 3-6 months and he answers questions that I may have. This helps me more than anything, I trust him and his knowledge of aneurysms. Get a good neurologist, he will run tests when necessary and answer questions that the surgeon may not even be able to answer, we have discovered this. It is a long road ahead, it has been a little over 3 years for me and I still struggle with different problems. I would confront your surgeon on your return visit with the information the nurse gave you, sometimes they are unaware what goes on outside of the operating room!

Best of luck!