Blood clot, brain surgery, light headache and dizzy

[johan_ugm]

Hello..

Would like to seek your opinion and sharing,
following are my wife situation:

She is 33 years old and recently in Dec 2009 diagnosed have
Right Temporal Lobe Hematoma (brain blood clot) sized 2.3 x 2.5 x 2.1 cm (CC x TS x AP).

Prior this diagnosed, she has symptoms as such:
1.Intense Headache and dizziness
2.Short period (10 seconds) like complete loss of muscle tone
3.Feel want to faint, and nausea and like want to vomit
4.Sometimes like as a sinking feeling in the pit of the stomach
   or a sense of "deja vu" (already seen)
5.Smell something like alkohol which others did not smell it.
6. Could not walk steadily due to dizziness

Then after few round assesment (CT Scan, MRI, Cerebal Angiography) and monitoring her situation,
the neurosurgeon adviced to have surgery to remove that blood clot.

Surgery then performed about in end of Dec 2009, it was successfully to remove some part of blood clot.
According neurosurgeon, he removed/evacuated about 3/4 of blood clot, and there is still remaining about 1/4 blood clot,
because he did not want to search deep inside to remove that blood clot that near to hippotamus (memory area) of right temporal lobe,
to minimize risk/side affect of deficit of surgery.

Then after surgery, my wife was given medication consist of:
- Dilantin/Phenytoin (300 mg/day)
- and other brain-tonic/vitamin medication

just 2-3 days after surgery, she feels betters as such some symptoms was reduced
(e.g. Less headache, smell feeling no more, musle tone no more, deja vu feeling no more),
however she still feels symptoms like, Dizziness, sometime have some headache (although not intense)

Over time (about 3+ weeks after surgery) while she keep taking the medication, the more days pass,
she feel worse symptoms as such getting more dizziness and sometime stiff at neck, shoulder, head like want to fall down/cut,
and getting difficult to walk steadily.

Fortunely return to doctor and did blood test on Dilantin doses, and got caught that her body has overdose of Dilantin (21.78 ug/ml, normal should be 10-20 ug/ml)
which suspect the cause of those her above symptoms, consequently neurosurgeon adviced to stop that Dilantin,
and after following my wife also stop other all medication after one months from the date of surgery.

Now the time already pass two months since surgery, and one months stop over from medication,
however till now, my wife still feel following symptoms:
1. Dizziness still exist, thus walking could not be too long/far..
2. headache is lesser, sometime still happen
3. some time still have feeling like want to faint
4. stiff at neck and shoulder and head like weightless
5. sometime head like want to fall down
basically some thing like medical term they called as "Light-headedness"


Question to ask from forums/doctors/patients experiences before:
1. Whether my wife condition/symptoms consider as normal after this type of surgery?
2. How long normally those condition will getting better?
3. Any one have similiar of experiences that can share?
4. What should we further do, treatment, theraphy, medication?
5. Another point, during process of cerebal angiography my wife saying she feel some pain at his leg/front thigh area when radiologist push the catherer inside,
   whereas heard from some others saying should not have those pain, could anyone share/comment this experience?

Appreciate your feedback and sharing.

Thanks a lot..
Johan & wife and family..

[johan_ugm]

Rumpled, really appreciate a lot your input, by knowing this forum and comment your gave so far, provide some relief to us, especially understand my wife surgery and clot treatment that going to take time to heal, at least we are less worry with the symptoms that she experiences, and we could lower down our expectation to have fast recovery.

I received your info about the drugs, we will take explore about these medications, thank a lot. we may consider to seek other medical opinion, but at least we monitor first my situation day to day.

[rumpled]

Are you in a position to get another medical opinion - I am not a doctor, but most clot treatments usually persist in a consistent way (no breaks) for a period of time, and that is usually longer than well, you are getting.

The vitamin B would be to help muscles and nerves, C, immune system, (I think), Nootropil improves microcirculation, Cavinton Vinpocetine is a memory enhancer, Duxaril (Almitrine Raubasine) is supposed to help diminish the ringing in the ears.

I would get the inserts from the drugs and look - now, just because they say they will have side effects does not automatically mean you will get them, but all but the vitamins have them so  you need to be watchful, and those meds cannot be stopped in one day, but some have to be stopped slowly and weaned off.

The dilantin now should not be the issue. You wife had a major, major health event and must heal. It is going to take time.

[johan_ugm]

Thanks for your response, yesterday we went back to her Neurosurgeon for second month follow up.

We told the doctor some symptoms still persist, such as light headache/dizzy, stiff neck/shoulder, eye tired, some time there slight chest pain move around different area of chest.

Then the doctor advice to take blood test of Dilantin first to see whether it still due to this, the MRI test might be later time.

Also given to resume medications other medication except Dilantin. Given Vitamin B-Complex, Vit C, Nootropil 800mg Piracetam, Cavinton Vinpocetine 5mg, Duxaril (Almitrine Raubasine). Somemore these medication being given for 3 months.

Today, we got the result of Dilantin level which already reduce to 0.48 ug/ml. However the doctor has not yet told us the detail, we still waiting his comment.

Would like to seek your opinions:
1. With that low level of Dilantin and already stop Dilantin since 1 month ago, will it still cause any side affect with above symptoms?
2. Given those above set medication to resume for next 3 months, should it be ok or could it cause any other side affect, as we noticed some of above drugs could have others side affects?

Appreciate your advice.
Thanks a lot,
Johan & family.

[rumpled]

I am glad you also posted on the expert forum, and hopefully a doc will respond, or that others will come along.

The dilantin overdose is pretty common - at least, I hear about it a lot - you would think they would watch for it more... *sigh* but since the symptoms mimic other things, they would test often instead of always blaming a sick patient.

Let us know what the doctor says. It is going to take some time to recover - even from clots that are less deep, it can take a long time. Have they prescribed any physical therapy?

[johan_ugm]

Thanks Rumpled for your response. The medication stop as per Doctor adviced. Mainly due to Dilantin overdosed, and other medication is for brain tonics and stop afterward after finish 1 months medication.

Tomorrow we will have appointment check up for second months, will ask the doctor the same question. we also seek from this forum to know sharing from others experiences, as we are puzzling why the dizziness still last so long after surgery and have gotten also neck and shoulder stiffness, also these few days she also feel her eyes like very tired..

Hope to hear more response and sharing/advices.

[rumpled]

Has she had another follow up appointment? If not, she should schedule one so she can ask these questions to her doctor who can answer them based on her case.

Since she still has the clot, it would seem normal to still have regular monitoring, and I am not sure why the medication was stopped - was that the doctor, or for other reasons, that it was ceased? Dilantin is to prevent seizures - but what about the clot?

I have had a catheter put in from my groin to my head - sometimes they put you in twilight sedation to minimize the feelings, other places do not - and yes, you will feel it, and it does not feel that great - and from my friends that had it, it does hurt despite what the doctors say.

I would make a trip back to the doctors.