Living With Cavernous Angioma

Pain Management/Control

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18 months ago I had a CM removed.  It was located immediately dorsal to the left fronto-parietal junction region... in the postcentral sensory cortex of the brain.  I have been dealing with numbness, tingling and pain in my right leg.  My foot bothers me the most.  It always feels bloated... It reminds me of the same feeling I got from the dentist when he numbed the gums and cheek.  And at the same time my ankle and foot feel like they are trying to shrink.  The toes feel like they're are curling over each other.  I'm in a lot of pain!!!  I've tried Baclofen (up to 90 mg/day) but it didn't help.  It is very difficult to walk.

Does anyone have a suggestion or idea (therapies, meds, etc...) I could speak to my neurologist about?
Quote (HARMONY @ July 07 2010,06:00)
18 months ago I had a CM removed.  It was located immediately dorsal to the left fronto-parietal junction region... in the postcentral sensory cortex of the brain.  I have been dealing with numbness, tingling and pain in my right leg.  My foot bothers me the most.  It always feels bloated... It reminds me of the same feeling I got from the dentist when he numbed the gums and cheek.  And at the same time my ankle and foot feel like they are trying to shrink.  The toes feel like they're are curling over each other.  I'm in a lot of pain!!!  I've tried Baclofen (up to 90 mg/day) but it didn't help.  It is very difficult to walk.

Does anyone have a suggestion or idea (therapies, meds, etc...) I could speak to my neurologist about?

For some time after my big bleed, I took neurontin (gabapentin), and it helped reduce the numbness, tingling and pain. I stopped after a while, then started again for nerve-related back pain. It was really helpful, but then I started getting some weird side-effects. (I stopped, and I have to talk to my neuro about that to see if I'm going to continue.)

You might want to see if it helps.
Hi Harmony,
my CA was very near that area as well. I'm sorry your having problems still. I feel numbess in my arms at times, especially when I use them.
I'm sorry that I don't have anything to recommend for pain. What does your neuro suggest?
It has been 7 months since I've seen the neurologist.  I was extremely unhappy with her patient care.  It was my hope that as time passed, I would quickly heal... And never need to be seen by Neurology again...  But this hasn't been the case.  The pain, numbness and tingling still exist.  I've delayed the purchase of wheelchair or scooter... And modifying my vehicle.  I really need help finding a neurologist who understands my situation.
Quote (HARMONY @ July 08 2010,04:31)
It has been 7 months since I've seen the neurologist.  I was extremely unhappy with her patient care.  It was my hope that as time passed, I would quickly heal... And never need to be seen by Neurology again...  But this hasn't been the case.  The pain, numbness and tingling still exist.  I've delayed the purchase of wheelchair or scooter... And modifying my vehicle.  I really need help finding a neurologist who understands my situation.

While it may be justified to be unhappy with your neurologist, it's not the doctor's fault that you're not healing as quickly as you would like. It can take a couple of years to recover from bleeds, depending on how big they were and where they are located.

Most of us see a neurologist at least once a year, and are likely to do so for the rest of our lives, if we've had bleed. I get an annual MRI and see my neurologist after that, and, most years, call him at least once for questions.
Harmony
Kirk is absolutely correct it takes time to heal and the deficits you have going in to surgery are the deficits you come out with!!!!
Surgery can only stop further decline and brainsurgery is always a hazard lot´s of people come out much worse then before the surgery.
I´ve never had surgery but bled on numerous occasions and some of the thins that happened have healed if not 100% then to a tolerable level.But some are still causing major problems (pain,tingling,difficulties in swalloing,loss of gag reflex,overflow incontinence étc...) for that I take med´s like Neurontin.
You can be unhappy with a neurologist but she or no one can cure this only time will tell how well you´ll recupperate.
And you still have to live with the notion that you might never be the same as before but a new you has evolved for better or worse.
So take care of yourself and be grateful that you´re alive and can be with your loved ones and live don´t dwell in the past.
I think I should clarify my situation...  I'm not upset with the fact she can't cure my problems, but the lack of compassion and quality healthcare.  The neurologist cut the last appointment down to 5 minutes because she was behind schedule.  She told me to schedule another appointment if I wanted to discuss any other issues. It typically takes 1 to 2 months to get an appointment.       

I didn't even have the chance to tell her the great news.... A few months before this appointment (out of no where) I was able to ever so slightly flex my toes.  I looked at those five toes and told them to move and they did!!!  I tried this many times, but it never worked.  This was the most progress I made since the surgery.  (It took eight months since the surgery).  My gait has improved and I find it easier to keep the right shoe on.  Yes, I've learned to appreciate the smaller things in life.

Sure, I'm much better off than many other people, and very lucky to not be battling any other neurological disease such as MS or CP.  I pay a lot of money for healthcare and I schedule medical appointments when I genuinely have a concern.  If there is a possibility of reducing the pain I'm in,,, I would like to know.  And that is why I've reached out to members of the Angioma Alliance.  The information I've received thus far is appreciated!
Update!

Last week the neurologist prescribed me Gabapentin Capsules 300 mg 3x daily.  I started off with 1 capsule at bedtime.  Then increased by 1 capsule every 2 to 3 days until I reached a dose of 1 capsule 3x daily (900 mg).  I've been on the full dose for 3 days and I can feel a difference.  This medicine has taken the pain down 1 to 2 levels.  With the right pair of shoes (Chung Shi) and this medicine, I'm able to walk properly for a longer period of time and with less pain.

As for side effects... first day I felt a little sick, dizzy and drowsy.  And I had crazy vivid dreams.  After a few days most of these symptoms disappeared.       

I'd also like to thank kircmc and ketogan for responding to my posting.   :D  :D
Good that the Neurontin has done some good if 900mg´s isn´t enough then increase it until you feel that you have the pain under controll.
Of course you need to ask your doc permission to do so I take 1800mg´s at the moment but i´ve have had to take really high doses such as 4500mg´s.
The only negative side effect I have had is weight gain so keep an eye on your diet as Neurontin slows the metabolism.
Also take very good care of your oral hygien as it also causes hypoactivity in mouth (less saliva) thus increasing the risk of getting cavities.
Other then that so happy that you feel better and keep the tail up:)
I'm so glad you have found something that makes you feel better.  Best of luck & take care.:)
Update

One capsule 3 times daily (900 mg/day) wasn't enough.  Each 300 mg capsule provided about 4 hours of limited pain relief.  So I met with my neurologist and the prescription was increased to 1 capsule 6 times daily (1800 mg/day).  This medicine really works!  Today, I was able to walk 3.3 miles (5K) with little pain.   

Please note,  I had to wear the right pair of shoes...  I now wear Chung Shi shoes...  I own 4 pairs of theses shoes.  They help me walk correctly.  If I decide to wear any other brand shoe, I won't be able to walk nearly as far and I will be in need my walking cane.  I finally found something that works for me... Gabapentin and Chung Shi shoes.         

Side effects: I'm experiencing an increase in cognitive impairment and hair loss.  And I still have very vivd (funny/crazy) dreams... 

Today was a good day!     

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