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DBS: issues 2 Years Post-DBS Surgery


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#1 PhilSinTX

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Posted 29 March 2012 - 05:49 AM

Doctors;

I am a 50 year old PWP diagnosed 6 years ago. I had DBS first done in 2009, but then had the whole installation taken out and replaced in 2010 due to a very difficult to find (although it was ultimately found) lead break.

I would appreciate your thoughts on the current DBS-related symptoms I am experiencing:

1. First, over the past two weeks, my left burr hole has gotten significantly larger-- it protrudes further from the top of my scalp than previously, and has gotten bigger around. It is rock hard-- it does not feeL to the touch like it is fluid. My general neurologist and my Movement Disorders doc, referred me for a CT scan. CT scan and blood cultures showed no infection, or any other reason for the change. Have you experienced such a change in the burr hole area, even 2 years post-surgery? What recommended actions might you suggest?

2. For about the past month, I have had 3 incidents of migraine. Previously, I had migraines typically 4-5 times a year. These are very intense, and last anywhere from about 5 hours, to my current one that has come and partially resolved, and come and partialy resolved (which is an unusual pattern for me) 3 times now. Can DBS affect the occurrence of migraine? Could this migraine issue be related to the above burr hole-issue?

3. Particularly over the past 2 months, most intensely after I wake up (and lasting several hours thereafter), I am experiencing a very strong "internal vibration." It is not visible externally, but is clearly very irritating. Is this common? I am due for a reprogramming in a couple of weeks, so I don't yet know if programming changes could potentially improve this?

I am out of town right now, so I only have phone and e-mail connectivity to my Neurolgist and Movement Disorders doc (both of whom I have great confidence in). They aware of the issues though, so we are discussing them. In the meantime, I thought I'd ask you opinion too.

Thank you!

#2 Dr. Okun

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Posted 29 March 2012 - 08:27 AM

1. First, over the past two weeks, my left burr hole has gotten significantly larger-- it protrudes further from the top of my scalp than previously, and has gotten bigger around. It is rock hard-- it does not feeL to the touch like it is fluid. My general neurologist and my Movement Disorders doc, referred me for a CT scan. CT scan and blood cultures showed no infection, or any other reason for the change. Have you experienced such a change in the burr hole area, even 2 years post-surgery? What recommended actions might you suggest?

It is important for the neurosurgeon to look at this. It could be completely normal and we do see this happen. It could be a fluid collection, from pressure in the brain, or infection.

2. For about the past month, I have had 3 incidents of migraine. Previously, I had migraines typically 4-5 times a year. These are very intense, and last anywhere from about 5 hours, to my current one that has come and partially resolved, and come and partialy resolved (which is an unusual pattern for me) 3 times now. Can DBS affect the occurrence of migraine? Could this migraine issue be related to the above burr hole-issue?

Some people do have more headaches after DBS and it is hard to know if related.

3. Particularly over the past 2 months, most intensely after I wake up (and lasting several hours thereafter), I am experiencing a very strong "internal vibration." It is not visible externally, but is clearly very irritating. Is this common? I am due for a reprogramming in a couple of weeks, so I don't yet know if programming changes could potentially improve this?

I am not sure if this is DBS related. Sometimes higher settings induce tremor, so one thought is for you to see if it resolves when you turn off the DBS. The other thought is that programming is not optimized. Finally, a third thought is that it is unrelated.

Michael S. Okun, M.D.
Author of the Amazon Bestseller Parkinson's Treatment: 10 Secrets to a Happier Life
National Medical Director | NPF
UF Center for Movement Disorders & Neurorestoration
Read More about Dr. Okun at: http://movementdisor...hael-s-okun-md/
or Visit Parkinson's Disease treatment and research blogs at:
NPF's What's Hot in Parkinson's disease
or his parkinsonsecrets.com blog for treatment tips


#3 PhilSinTX

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Posted 06 April 2012 - 06:47 AM

Thanks, for your prior reply,Dr. Okun!

Wanted to give you an update, and welcome any comments/observations you want to offer.

Continued to struggle with migraines, jaw problems, and a whole host of other neuro symtoms. Figured I'd turn my DBS OFF to see what would happen. Aside from the return of my tremor, within 30 minutes the headache resolved, my jaw loosened, and the other neuro symptoms improved!

TI turned the DBS back ON. Within about 45 minutes, the migraine pain and other neuro symptoms came back. Something was obviously wrong. Got ahold of my MDS in Dallas, and she asked that we return to Dallas the next day for an appointment and testing on the DBS system, XRays, and MRIs. We did.

The end result is that I have a short in my DBS system. My MDS, consulting with Medtronic, figures the highest likelihood location of the short is in one of the extensions in the DBS system. I am currently waiting to see my neurosurgeon, and assuming he is in agreement, we will move ahead with the surgery to fix it.

In the meantime, my DBS settings are at zero, and the system is completely OFF. Meds have been adjusted upward to compensate. Was doing fine until yesterday, when my meds stopped working. I'm shaking like hell. I guess I am experiencing what life without DBS would have been like... not pleasant at all! If you, or anyone reading this, ever wants a testimonial for why DBS is such a good thing, I'm your man! Even with the repairs I have needed to my system post-installation, the benefits have far outweighed the risks, in my/wife's humble opinion!

Thank you for being there to offer opinions and guidance! I look forward to meeting you one day!

PhilSinTX

#4 Dr. Okun

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Posted 08 April 2012 - 07:03 PM

Thanks for the update and glad you are tracking down the issue and addressing it.

One tip for when doses are not working is to crush an extra 1/2 or full tablet of sinemet and take as a rescue. This is something you can discuss with your doc.

Michael S. Okun, M.D.
Author of the Amazon Bestseller Parkinson's Treatment: 10 Secrets to a Happier Life
National Medical Director | NPF
UF Center for Movement Disorders & Neurorestoration
Read More about Dr. Okun at: http://movementdisor...hael-s-okun-md/
or Visit Parkinson's Disease treatment and research blogs at:
NPF's What's Hot in Parkinson's disease
or his parkinsonsecrets.com blog for treatment tips





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