Jump to content
helplinedonate
  • Announcements

    • ForumAdmin

      Frequently Asked Questions - Step by step guides

      Do you need assistance registering, logging in, posting, etc? Please visit the all new Frequently Asked Question Forum for step-by-step guides. Click the link below to access these helpful guides. Frequently Asked Questions
    • ForumAdmin

      Recursos Nuevos en Español

      http://www.parkinson.org/ayuda   http://www.parkinson.org/espanol    
    • ForumAdmin

      Línea de Ayuda 1-800-473-4636

      Línea de Ayuda 1-800-473-4636   ¿Qué es la línea de ayuda 1-800-4PD-INFO (473-4636) de la Fundación Nacional de Parkinson? Es un número de teléfono gratuito que ayuda a las personas con la enfermedad de Parkinson, sus familiares, amigos y profesionales de salud, a solucionar diferentes inquietudes.   La línea de ayuda ofrece: Información actualizada Apoyo emocional Referidos a profesionales de salud Recursos comunitarios Amplia variedad de publicaciones gratis    
RNwithPD

Approved for DBS

Recommended Posts

I just received word today that the DBS team at Vanderbilt have approved me for DBS surgery. I am scheduled to meet Dr. Hamid M Shah, neurosurgeon, at the end of the month. If any of you have personal experience with this surgeon - good or bad - I would appreciate you sending me a message to let me know, as I don't know anything about him.

I have been reading a lot about DBS and weighing the risk-benefit ratio. A couple of good books on the subject are: DBS: A Patient Guide to Deep Brain Stimulation by Sierra M Farris, PA-C and Dr. Monique L Giroux, M.D.; and Parkinson's Disease: Diagnosis and Clinical Management by Stewart A. Factor and William J. Weiner.  They intend to do bilateral STN. I have to admit that I go back and forth on whether I should have the surgery or not. When my meds are working well, I think that I don't really need the surgery. Actually, I think I need this surgery like I need another hole in my head. And when they're not (and I'm standing in the back of the store unable to walk due to sudden dystonia in my leg and foot), I can't wait to have the surgery. If only I could see into the future and know exactly how it will affect me. I'm sure that those of you who have already had the surgery know all to well what I'm going through.

Anyways, just thought that I'd share where I'm at in my journey and hopefully get some feedback on the person who is most likely going to poking around in my brain.

Kevin

  • Like 1

Share this post


Link to post
Share on other sites

Don't have dbs if you are unsure if you need dbs. Dr okuns group don't necessarily recommend dbs if you are satisfied with meds as you can read in PDF. Some center like to persuade you to do dbs early than late. This is not very helpful given complications from dbs. Dbs come with a trade off usually with speech, balance, other emotional side effects like uncontrollable anger, depression etc etc. Only consider it when it's worth the trade off. Also consider doing 1 sided dbs as it will greatly reduce speech balance and other side effects. You may not need other side in your life time. My recommendation is Only do dbs when you really really really feel that have no other way around. Less is better with dbs or none if you can stay happy with just meds. You really don't need machine and holes drilled in your head unless you really have to.

 

 

 

Edited by waruna01

Share this post


Link to post
Share on other sites
12 hours ago, waruna01 said:

Also read this Guide_to_DBS_Stimulation_Therapy.pdf

 

 

This link doesn't work.  Would you mind fixing it or reposting an entire web address?

Thanks,

Kevin

 

Never mind...I found it.  Thanks.

Edited by RNwithPD
Update

Share this post


Link to post
Share on other sites

Right now I'm seriously considering not having surgery. When my doctor and I agreed to move forward towards DBS in July, she said that the DBS coordinator would call me to schedule everything. They called several days later and scheduled an appointment for me to come in and do the videotaped assessment as well as the psych exam. On the day of the appointment, I showed up at my doctor's office to check in, but they didn't have me on the schedule. I explained the reason why I was there, and the receptionist started making phone calls. After about 5 minutes, she put me on the phone with a lady who said that I was at the wrong location. She said the directions to the "physical therapy" center was in the packet of information that they sent me. However, I never received a packet of information. The lady on the phone apologized and said that the DBS coordinator who scheduled my appointment was no longer working in that department, and that she must have forgot to send me the package before she left. After waiting several more minutes, the receptionist received a fax with the directions to the physical therapy center and gave it to me. Needless to say, I was late for the appointment and I wasn't happy.

Upon arriving at the physical therapist's office, I noticed that the person who had signed in before me had the same last name as me - which isn't very common. The physical therapist stated that they had quite a bit of confusion because they thought that the other gentleman was me. But after several things didn't add up, they started checking birth dates and realized that they had two men with the same last name scheduled for pre-DBS assessments on the same day and at the same time. Not exactly what you want to hear leading up to brain surgery. And when I got to the psychologist's office the next day, I had to sit and fill out forms that were normally included in the previously mentioned package that should have been mailed to me before the appointment. At that point, I was fairly irritated and not feeling extremely confident about having surgery there; but my wife assured me it's just a simple mistake and not to worry about it.

After waiting for about 3 weeks, my doctor messaged me and said that the DBS board had approved me for surgery and that the DBS coordinator would be calling to schedule an appointment for the surgeon. The next day - which was Thursday of last week - she called and scheduled a surgical consultation for Tuesday, October 31st. When I told my wife about it that afternoon, she reminded me that Tuesday was the only day that she couldn't get off of work and that she would like to go with me. So, on Friday morning I called Vandy and asked to change the appointment to another day, but the lady said that Dr. Shah only does appointments on Tuesdays. After hanging up, I realized that I now had two problems: 1) I need a consultation appointment on ANY other day of the week EXCEPT Tuesday; and 2) if Dr Shah is in his office on Tuesdays, then he won't be able to perform Phase II of the surgery on a Tuesday - the ONLY day that my neurologist can be in the O.R. with me. I had already decided that I absolutely wanted her there with me during placement of the electrodes because if something goes wrong, she knows me and will be able to recognize it faster than anyone else. SO...I called back and asked for the DBS coordinator. After holding for a few minutes, the receptionist told me that they were both out of the office and that I would need to call back on Monday. I asked for a number so that I could call them directly, but she said that they didn't have a direct number and that I would have to call her back and ask to be transferred. :angry:

On Monday morning of this week, I called Vandy back and asked to be transferred to one of the DBS coordinators. The phone rang several times and then a voicemail picked up. The message stated to leave my name, number, date of birth, and a detailed message as to why I was calling. It also went on to say that it might take 24-48 hours to receive a response and for me NOT to leave additional messages as this would just increase the time it would take to get back to me. So, I left my message and stated my name, birth date, and phone number at the beginning and end of the message. After hanging up, I wondered why I couldn't have just left a message on Friday instead of calling back on Monday!?!?!?!? Anyways, as of today, Friday, I have never heard back from her.

I'm beginning to feel like maybe it just isn't meant to be for me to have this surgery right now. For one thing, I feel like I'm having to beg to have it. And then I also think that if I'm having this much bad luck leading up to surgery, that it doesn't' bode well for the surgery itself. Am I just letting pre-op jitters get to me, or would you all be worried about all of this as well?

Sorry so long.

Kevin

 

 

Edited by RNwithPD

Share this post


Link to post
Share on other sites

You can’t undo this surgery and it’s good and bad effects. Don’t do it with second thoughts about it. You seem like you are considering it for pressure. Your body and mind will tell you when you really need to consider this surgery. It’s not a marathon. So don’t rush. If you wait few more years, they will likely have more advanced dbs devices and implantion techniques by then. You can also research and learn a lot by then about good and bad side about dbs. Some thing to think about. You might even be able to get the dbs implanted by a more experienced dbs surgeon who has implanted hundreds of such devices. You will have time to research your doctors and dbs team. Get more second opinions from other dbs centers. Sierra has an excellent dbs team in Denver. UF Florida is good too.

Share this post


Link to post
Share on other sites

Obviously you're perfectly able to make up your own mind.  But here's my take.  You've been approved, so clearly you meet the risk and severity of PD guidelines so the surgery is probably likely to do you more good than harm.  However, you have some scheduling issues that are complicating matters.  I would probably ask to meet with your MDS and get her take on what is going on.  If they've had some turnover it might be wise to postpone for a few months to let the new people get into the swing of things.  Also, that would let you discuss scheduling issues between the surgeon and your MDS and see if you can get something figured out.  Plus that extra time might give your wife an opportunity to see if she can get a Tuesday off.  I know you said she "can't" get that of the week off, but with enough advance notice, and really good reason (i.e. going to your BRAIN SURGERY consultation) if her boss is still unwilling to work with her I would consider alternate employment options.

 

I don't think this is necessarily a reason to abandon DBS.  But it is a reason to pause.  And it might be a reason to go with a different neurosurgeon/center.  You need to have faith they will be competent for the whole range of things you're going to be depending on them doing well.  Everything from initial consultations, to the surgery itself, to the aftercare, to the programming.  If you aren't supremely confident with that whole package then don't proceed.  Even the very best surgeons have complications, and you want to know that your risk of that is as low as possible, and if you do have complications that you are in the best possible hands to mitigate those problems.  Going into it with less than total faith is just asking for something to go wrong.

 

I know it's far less serious than DBS, but I had what I thought might be a recurrent hernia.  Turned out not to be that, but when I got a referral to a surgeon to get it checked out I specifically demanded a different group from the last time.  Why?  Although the surgery itself went well (and even the new surgeon said it looked like a good job when we reviewed the CT scan) I had no faith in that first surgeon or the group he worked with.  After that last surgery they messed up my prescription paperwork not once but twice.  And the only reason I think the 3rd time they got it right was my surgeon was gone for the day and the top boss of the surgery department had to fix it.  That left me without any pain meds for 7+ hours and I was literally screaming in pain by the time my wife finally was able to get my prescriptions filled and get them to me.  As a result of that I have zero faith in that surgeon (and, thanks to a previous mistake I won't detail right now just for time's sake, the rest of that group too).  

Edited by stump

Share this post


Link to post
Share on other sites

Kevin,

if you’re not comfortable I would postpone the surgery.

Dave

Share this post


Link to post
Share on other sites

Thank you all for your responses. As I told my MDS, if we were talking about a bypass surgery I wouldn't be worried all that much - the worst that can happen is death. But when working on my  brain, I might not come out of the O.R. the same person that I was when I went in.

The reason my wife can't get Tuesday's off right now is because that is the day that she teaches clinicals for nursing students. It's a second job that she took on when I had to leave work, and it's the only day of the week that she works for the university. She is under contract for the entire semester.

I would love to be able to check out other DBS centers, but I cannot see any way that we would be able to afford that. Besides, I feel pretty confident in Vanderbilt's doctors, just not their support staff. As seemingly disorganized as they are right now, it concerns me about the prospects of getting the follow-up care that I will undoubtedly need access to in a reasonable time-frame.

Again, thank you for all of your comments. I will continue to ponder this over the weekend and hopefully make a decision the first of the week.

Sincerely,

Kevin

Share this post


Link to post
Share on other sites

So, if you wife is teaching nursing students, then presumably this is based off a school schedule.  Try to see if you can get your consultation scheduled during the break between quarters/semesters.  There's usually at least a couple weeks in between that would give you options.  Since it's October that might mean waiting until mid-late December.  From the sounds of things, that might not be such a bad thing to wait that long anyway.

Share this post


Link to post
Share on other sites
23 hours ago, RNwithPD said:

Thank you all for your responses. As I told my MDS, if we were talking about a bypass surgery I wouldn't be worried all that much - the worst that can happen is death. But when working on my  brain, I might not come out of the O.R. the same person that I was when I went in.

The reason my wife can't get Tuesday's off right now is because that is the day that she teaches clinicals for nursing students. It's a second job that she took on when I had to leave work, and it's the only day of the week that she works for the university. She is under contract for the entire semester.

I would love to be able to check out other DBS centers, but I cannot see any way that we would be able to afford that. Besides, I feel pretty confident in Vanderbilt's doctors, just not their support staff. As seemingly disorganized as they are right now, it concerns me about the prospects of getting the follow-up care that I will undoubtedly need access to in a reasonable time-frame.

Again, thank you for all of your comments. I will continue to ponder this over the weekend and hopefully make a decision the first of the week.

Sincerely,

Kevin

Vanderbilt has a great reputation. When it comes to dbs, volume matters. Ask your surgeon how many dbs surgeries he or she has completed. Ideally it needs to be over 100. Experience will reduce side effects from lead insertion such as strokes and suboptimal placement of leads. My recommendation is to wait for now until you are 100% sure you need it. and do dbs on one side when you do it which will reduce side effects by 50%. You can do the other side later if PD develops in other side later on. Greater the risk of side effects with two leads.

Share this post


Link to post
Share on other sites

When I choose dbs I felt I had nothing to lose

the  meds where not working I increased dosage and had side effects that required 

physical therapy

the operation was not so bad, did both sides at once, the recovery was long but not longer than i was told it would be

the good news is it was very successful,I never thought i would feel this good again

so, yes its a gamble but theres a possibility of a big win and the odds are in your favor

any questions you have I would be glad to answer

 S

Share this post


Link to post
Share on other sites
3 hours ago, scottwh said:

When I choose dbs I felt I had nothing to lose

the  meds where not working I increased dosage and had side effects that required 

physical therapy

the operation was not so bad, did both sides at once, the recovery was long but not longer than i was told it would be

the good news is it was very successful,I never thought i would feel this good again

so, yes its a gamble but theres a possibility of a big win and the odds are in your favor

any questions you have I would be glad to answer

 S

You should ideally only only do dbs when you have nothing to lose. Be warned of possible speech and balance trade off

Share this post


Link to post
Share on other sites

lol

my speech and balance are much improved

what is your objective in scaring people waruna

your best source of info is a neuurologist

s

 

Share this post


Link to post
Share on other sites

sorry that was a little harsh!

my understanding is those symptums that respond to ei dopa

will respond to dbs

that is unique to the individual and since progression continues

those that  don't will get worse

complicating this is you will be able to exersize more so that may delay progression

there is a 2-3% chance the operation will go badly ,that's not high but its not nothing either

hope this helps

S

Share this post


Link to post
Share on other sites

and of course

you could have a hard recovery(6 to 12 months)

or

a easy one (jump up and go)

or most likely somewhere in the middle!

S

 

Share this post


Link to post
Share on other sites

Scott, Warana likes to scare the hell out of anyone considering DBS.

For those of use who still have a lot of living to do, and wish to reset that damn clock, then DBS is worth it.

For me my limit for walking was to the mailbox and back (200 ft). After DBS, and with my faithful Golden Retriever at my side a 5K walk is not only possible, but fun.

70W6nNL.png

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now


×