New to Group - Am I right to delay surgery as long as possible?

Hi Everyone,

I stumbled across this group searching google for advice. I was diagnosed in early March after a series of MRI's that my PCP ordered after my headache complaints. to be honest I was diagnosed pretty quickly - within a week of my initial PCP appt. I went to a NL a week later and he seemed to thin surgery asap was the way to go. I have found a really great NS and I go for my follow up in a couple of weeks after some additional MRI's to check progress. My NS has said I should wait as long as possible before getting surgery, until I absolutely cannot handle the pain anymore.

So far I have had very few days out sick from work and I have not had any high pain days in a while. I want to delay as long as possible number 1 because I'm scared of the surgery and have always had a fear of being under anesthetic. Number 2, all of my family live 3,000 miles away there is just my husband here with me and we have 2 young children.

Are there any chiarians out there who have yet to have surgery and do not envision getting it done for a long time? I would really like to hear how you deal with pain attacks.

Sorry for the long post I have tried for so long to find someone to talk this through with that really understands.

Thanks

H

I'm having the same issue myself. I'm actually scheduled to have surgery Dec.7. but am seriously reconsidering it. I feel like i have some good days and maybe I can live with this a little while longer. I found this group also looking for some wisdom as to which way to go. I was diagnosed last Sept. after getting a Mri for something totally unrelated. But once i found out I had Chiari...all my issues started to make sense and the floodgates just opened up cuz i realized i was crazy afterall. My recent CINE mri showed my csf flow is slowing in the front and back of my brain and my herniation went from 6mm to 9 mm...so here I am at this surgery crossroad...sigh. I guess if I truly understood what the slowing of the flow means in the long run, maybe i wouldnt be so...scared.

I just had surgery 10 days ago and am so happy that I did! I am noticing a host of things getting better and it will be like Christmas every day for a while. Dr. Oro told me that it could be up to a year before this or that resolves, so each day I wake up I feel like I am peeking down the stairs at the Christmas tree in anticipation of what wonder I will discover today.

In all of my research, it seems as though the sooner this condition is treated, the better. I would love for others to chime in on this one, but my understanding is that the longer symptoms persist and new ones develop, that it could be tougher to find relief through surgery the longer surgery is put off.

I was TERRIFIED and spent two weeks asking all my loved ones if i was going to die while on the table. At the same time, though, i knew i couldn't wait and keep living with the quality of life I had, which was getting to be almost none. Knowing that I had no other options because the symptoms were progressing in number and severity, andknowing i was in the hands of one of the top neurosurgeons in the world, I just stayed busy until surgery day....and here I am.

I would encourage you to investigate reasons to get it done as much as investigating reasons to wait. The condition and symptoms don't just get better, but need skilled intervention.

What neurosurgeon did you see and why did he tell you to wait as long as you can? what state do you live in?

Please tell us more!

I am rooting for you!

I'm in NJ, and he is experienced in CM. He felt that the cons outweighed the benefits at this point in time, with me having young children and no family support other than my husband who has been great. He did tell me though that the moment the pain gets too much to handle or if it starts to drastically interfere with my every day life - then that is when I should take the surgery route.

I see him again in a couple of weeks for my 6 month follow-up and am having new MRI's done, so depending how they come out it may be a different story. I know that the symptoms won't get better on their own, but my feelings are that I have already been living with this for so long what have I got to lose by waiting it out as long as I can.

I think my fear is probably 90% of the reason for my decision to hold off.

I appreciate your advice and wish you a speedy recovery.


gunna2gtthr12 said:

I just had surgery 10 days ago and am so happy that I did! I am noticing a host of things getting better and it will be like Christmas every day for a while. Dr. Oro told me that it could be up to a year before this or that resolves, so each day I wake up I feel like I am peeking down the stairs at the Christmas tree in anticipation of what wonder I will discover today.

In all of my research, it seems as though the sooner this condition is treated, the better. I would love for others to chime in on this one, but my understanding is that the longer symptoms persist and new ones develop, that it could be tougher to find relief through surgery the longer surgery is put off.

I was TERRIFIED and spent two weeks asking all my loved ones if i was going to die while on the table. At the same time, though, i knew i couldn't wait and keep living with the quality of life I had, which was getting to be almost none. Knowing that I had no other options because the symptoms were progressing in number and severity, andknowing i was in the hands of one of the top neurosurgeons in the world, I just stayed busy until surgery day....and here I am.

I would encourage you to investigate reasons to get it done as much as investigating reasons to wait. The condition and symptoms don't just get better, but need skilled intervention.

What neurosurgeon did you see and why did he tell you to wait as long as you can? what state do you live in?

Please tell us more!

I am rooting for you!